Read Our Journal!

Read Our Journal-9/20 - 2/04

Name:: Debbie
Email:
Date:: 09/20/02
Time:: 12:55 AM

Comments

Hi everyone!! Thank you so much for visiting our website and for your support in our efforts!! We are all working really hard to make a difference in the world of sma. Maybe with all of your help, we can spread the word about this disease and stop sma from killing ANY MORE innocent children and devastating families all over the world... Be sure to sign in and say HI!!

Name:: michelle
Email:: aworrell@columbus.rr.com
Date:: 09/21/02
Time:: 01:00 AM

Comments

Hey Debbie we at Miracle for Madison and Friends want to welcome your group in the fight against sma. We are so proud of Payton and his fight. His spirit is as strong as our Madison who has sma type 1 and is 5.5 years old. She has been going to kindergarten for the past three weeks and has been loving it. It seems like yesterday we were wondering if she would make it to her 2nd birthday yet alone make it to kindergarten. But when you believe in miracles they do come true. We also want to thank all the folks in FL ( your volunteer and donors) who have taken interest in the sma cause. You all need to give yourselves a huge pat on the back. So from MFM&F to Payton's Pals - nothing is impossible.

Name:: Jen B.
Email:
Date:: 09/21/02
Time:: 12:25 PM

Comments

This website is coming along.. it is going to be great when it is all finished!! I cant wait :)xoxo Jen

Name:: Debbie
Email:
Date:: 09/24/02
Time:: 12:24 AM

Comments

Hi Michelle and Jen!! Please be patient while we are still under construction with this website!! It is coming along and we have a lot of information to post on the site.. Please be sure to sign in and say hello and let us know you are with us in this FIGHT!!

Name:: Tracy and Skylar
Email:: ourlilsky@aol.com
Date:: 09/24/02
Time:: 11:13 PM

Comments

Hey Debbie and Payton! We stopped by to see how the site was coming along!! Skylar (type 1 almost 28 mo) and I will be in your fight for a cure!! Please let us know if there is anything we could do to help. (((HUGS))) to all of you!

Name:: Gina Fimbel
Email:: fimbel@andrewstoybox.org
Date:: 09/25/02
Time:: 02:21 PM

Comments

Hi Debbie, Payton & Crew: This website it great. What you are doing is so amazing!!! I am so impressed at the difference Payton is making. Thank you for fighting so hard for all of us. love Gina Fimbel

Name:: Debbie
Email:
Date:: 09/28/02
Time:: 12:16 AM

Comments

Hi Tracy, Sky and Gina!! THANKS for coming by!! It is so good to know that we have your support and to know how lucky we are to have so many great people on our side and working together to stop this disease from doing any more damage to any more families... Love to you all!!

Name:: grandma roz
Email:
Date:: 09/29/02
Time:: 01:57 PM

Comments

Hi little man. this site is going to be the bomb! Deb thank you so much for posting our rummage sale at the Salon in virginia....Anyone out there who is from richmond can contact us to drop stuff off or just come by and see what we have they can buy....contact crazyian@msn.com........remember its all to help paytons pals and the dread disease SMA........love to my sweet little boy and i miss you so much payton xoxoxox......

Name:: Jennifer Haws
Email:: JHAW6152@fau.edu
Date:: 09/30/02
Time:: 06:03 PM

Comments

Hello! All the fundraising events you have planned sound great! I am so excited about the cropathon in November. The Santas workshop sounds great too! Love to you all, Jennifer

Name:: Debbie
Email:
Date:: 10/02/02
Time:: 12:13 AM

Comments

Jacob Isaac Rappoport passed away peacefully in his parents arms early this morning (Shaina and Adi). We are so so so sorry for their loss and are praying for strength for them and their family at this time. Please email Shaina and Adi at Shaina@gate.net We miss you already Jacob.. Have fun running free in heaven with all of your new angel friends...

Name:: Debbie
Email:
Date:: 10/05/02
Time:: 01:40 AM

Comments

Our community garage sale is tomorrow all day!! WISH US LUCK!!! And also, good luck to Laura Stants and SMA SUPPORT in their efforts tomorrow with their fundraiser!!!

Name:: Ted Dowdell
Email:: abd5741@concentric.net
Date:: 10/06/02
Time:: 09:03 AM

Comments

Debbie, Congratulations on your very successful fund raiser at Coconut Key!! You and your committee did an outstanding job. Best of luck on your future endeavors - Ted Dowdell

Name:: Debbie
Email:
Date:: 10/06/02
Time:: 09:25 PM

Comments

WOW!!! THANKYOU so MUCH to the residents and neighbors at Coconut Key that sweat their bums off yesterday and helped to raise money for Payton at the garage sale!!! They raised $1400 all together and we are thrilled with the success of this sale!! Hopefully, we will be able to have one every six months in within our community!! Extra special thanks goes to Brian and Polly and Jimmy and Christine, ALL of their children, Mona, My BRIT neighbor, Ted, Leslie, AND everyone else that volunteered to stand out there and burn up ALL DAY!!! :) Our next fundraiser will be the crop-a-thon from November 8th-November 9th and it has just been brought to my attention that The Scrapbook Den is expanding their location to include a "cropping room" so if anyone else would like to sign up, please email me or respond on the journal for details!! We should be able to fit up to 50 people and are looking forward to "cropping away!!!" Breakfast, lunch, and dinner will be catered and we are expecting some press coverage thanks to Dionne's ability to get them INVOLVED!!!:) SO, HAVE A GREAT NIGHT and THANKS FOR YOUR SUPPORT!!!

Name:: Debbie
Email:
Date:: 10/07/02
Time:: 11:38 PM

Comments

Hey out there! I am looking for pics of our sma buddies out there!! If you would be so kind as to email your pics to Laura Stants (the computer guru) at laura@our-sma-angels.com she will be able to post them under our "pictures" site! We will eventually have a ton of pics up of our Paytons Pals events, but I would like to have pages of sma children with their name and age under the photo!! So, please send away!! We are desperate for some ADORABLE FACES on this site!!!:) THANKS!!

Name:: Debbie
Email:
Date:: 10/09/02
Time:: 12:55 AM

Comments

I would like to say a special thankyou to those of you that donated last weekend to our community garage sale!! Thank you Brian, Polly, Jimmy, Christine, John Mahr, Mona, Bert & Chari, Leslie Lott, Gloria McDonnell, Mike C., and Maureen and Dave and Sandra too!! THANKS SO MUCH for all of the donated items also--throughout the community there was a huge outpour of support through donated items and I am still recieving things for future garage sales!! You are all the best!! Love, The Freemans:)

Name:: Kelly Ernst
Email:: mkmernst@worldnet.att
Date:: 10/11/02
Time:: 01:22 AM

Comments

I'm glad to see that the website is coming along. I am so excited about being on the Board of Directors and looking forward to raising money that WILL one day find a cure for this horrible disease. I cannot stand to hear losing one more child to SMA. We have an anxious Board of Directors who are full of ideas, and a bunch of volunteers who are always willing to help. Together we will help SMA families and put and end to this fight.

Name:: Debbie
Email:
Date:: 10/17/02
Time:: 11:10 AM

Comments

Hello out there!! I am starting to feel a little better after getting my first cold in years, and almost ready to start tackling some Paytons Pals projects head on!! We have our annual spring benefit date. It will be on June 7th, so mark your calendars!! And this year it will be at the International Swimming Hall of Fame, overlooking the intracoastal!! Yes, I know, very fancy!! We are SO EXCITED!!! Payton has been doing great and even though he was without me for a few days while I attended Leahs' funeral, he seems to be just fine. I think he thought I was just out running errands.. Just for a few days!!!The funeral was very nice, for those of you that knew Leah, or are interested. It is difficult to watch them lower your best friend of 18 years into the ground, but I know that Leah is in a better place and I know some good things will come of her tragic tragic death. Leah, We all love and miss you and pray for your family... If anyone would like more information about this please email me. I would like to send out a very special THANK YOU to my sister, AMY, and her BOYFRIEND (who I kept calling her fiance!!--sorry guys!!), BRIAN, for taking such good care of me all weekend, giving me a shoulder to cry on, making sure I ate, and had a comfortable BED to sleep on and fresh TOWELS!! You both really really saved me this weekend and made a really rough thing a little more bearable. I love you both! Ok, OUR NEXT FUNDRAISER will be the 24 hour CROP-A-THON from November 8th-November 9th. Please email me if you need more details. There may be a couple open spots!! This will be a catered 24 hours, with breakfast, lunch and dinner and snacks!! We will also most likely have some press coverage and also will have Payton there briefly so the girls can meet him!!! (And of course, you too Michael!!!) The mini-cropathon will be the 14th of November and then we will have our HUGE BLOOMIES SHOPPING DAY AT BOCA TOWN CENTER!! We need volunteers for this, so please let me know if you are available November 16th (Saturday) It will be a lot of fun, and they will have a wine/cheese party for us from 6-7pm at the store. Remember, 10% of ALL YOUR SHOPPING at BLOOMIES THAT DAY GOES TO PAYTONS PALS!!! We are looking forward to a crazy season and lots more fundraising coming up. I will keep you all posted as to what is up with our calendar of events!!! JOIN THE FIGHT AGAINST SMA!!!

Name:: Madonna
Email:: bogusmadonna@cs.com
Date:: 10/19/02
Time:: 01:52 AM

Comments

Payton, your mom is an awesome lady--I wish her peace in her heart with Leah--remember when a star shines brightly she is smiling at both of you- I lost a great friend years ago so I know the hurt your heart has to heal. God has a plan for everyone--God Bless Rob,Deb, and Payton!!!

Name:: Debbie
Email:
Date:: 10/20/02
Time:: 01:01 AM

Comments

Thankyou DONNA!! You are a great lady yourself!! I am so fortunate to have the support of so many great ladies!! I still have been thinking about Leah constantly, and I am just thinking about and remembering SO MANY times that we have had together. I feel lucky to have SO MANY memories with such a great girl. Payton is fast asleep, but doing great. We are looking forward to taking him to the movies again soon. Our next fundraiser is November 8-9th at the crop-a-thon!!! Please email me for details!

Name:: Michael Murphy
Email:: MurphDog0352@aol.com
Date:: 10/22/02
Time:: 03:41 PM

Comments

Hey Miss Deb,Rob,and Little Dawg, Glad to hear everyone is doing good, and little dawg is kicking butt. I'm somewhat getting ready for the crop-a-thon even though i have NO clue what to do, Martha Stewart i am not. But oh well ill try. So anyways i gotta run just wanted to drop in, take care and ill talk to you soon. Michael Murphy

Name:: CRAIG
Email:: CJD00074
Date:: 10/26/02
Time:: 09:10 PM

Comments

I FINALLY FOUND IT DEBBIE, I'LL GO AHEAD AND VIEW THE PICS.

Name:: Debbie
Email:
Date:: 10/26/02
Time:: 09:41 PM

Comments

Craig! SO GREAT to hear from you! I am glad you FINALLY found it!! The pics are on the www.oursmaangels.com/payton site, but there will be pics on this site too, eventually!! Hello, out there, I hope everyone is doing well!! We have been so busy, but things are good. Payton is doing great and THANK GOD he hasn't had to deal with whatever it was that I had yet, so we are keeping our fingers crossed that he is in the clear. We are SO IMPRESSED with his teacher "Miss Kelly" and she has been working with him quite a bit with shapes, colors, animals, etc.. It turns out that Payton knows all his primary colors and points out the right color by staring at the one you ask him for. He is such a little trooper and we, as parents, get VERY excited when he is challenged and stimulated mentally and he loves it too.:) I think he is starting to look forward to her visits. Speech is not going so well, but that is a whole different story, OT is fabulous and he LOVES Marilyn. And of course, there's always his absolute FAVORITE, Susan. As much as he absolutely HATES PT, I think he still loves her because she is such an angel!! I just got home from work and am working on The Bloomies invites for our fundraiser on November 16th, please email me if you want to be SURE that you get an invite!! This will be an all-day thing with a wine/cheese reception and 10% of all your shopping that day (as long as you register upstairs--3rd floor) will go to Paytons Pals!! We are waiting for the proposals from the University of Miami and then we should give the go ahead to do a HUGE project with them in the spring/summer!! We hope to get them up and running as a carrier testing facility and actually do carrier testing for free for those in south florida that would otherwise NOT be tested for the sma gene deletion. This is very exciting stuff and we are having tons of meetings/conference calls, etc.. to make sure we make a difference with sma, so WISH US LUCK!! We are all working very hard and I know that the amount of hours that the board of directors has put into this ALREADY is crazy but I thank you all for what you do. You really are amazing. I depend on you all so much and you have been there 100% since the beginning for Payton, Paytons Pals, etc.. Thank goodness for the good people that we have met since finding out about Paytons' diagnosis. I really don't know what we would do without you ALL!!

Name:: gma roz and girls
Email:
Date:: 10/28/02
Time:: 08:56 PM

Comments

hi deb, i know you are very busy and i just wanted to share the yard sale experience we had at Salon 1220 for Paytons Pals.... on saturday we closed the salon and the girls and I started to price and hang and box up things for sale,we all stayed til around 7 p.m. and then returned the next morning at 7a.m. to put out the furniture and balloons and hang our signs and get the auction set up... we were then ready to roll....open the doors and let the people roll in.... well with all the help from my girls, bill and a few friends and some clients we had a huge success... we raised 1460.00........PAYTON WE DID IT HONOR OF YOU........talk to you soon!

Name:: Debbie
Email:
Date:: 10/29/02
Time:: 06:31 PM

Comments

ROZ!!!! That is FANTASTIC!!! I bet you were surprised at all the work involved! I know we were! I think those garage/yard sales are the most physically demanding and take up the MOST time of ALL the fundraisers that we do, but as you saw, they can be SO SUCCESSFUL!! Please thank the girls and Bill for us, and the people in your community that continue to support our cause and Payton in his fight against sma. I will have literature printed VERY soon that you will be able to pass out at work and let them know just how much they are helping and exactly what we are doing to help fight sma. As always, you are the BEST mother in law!! LOVE YOU--Deb, Rob and Payton James Freeman :) I would also like to thank Bobbi from my neighborhood for the generous donation that was made to Paytons Pals this week!! It is amazing how the people in our neighborhood have really come out and shown their support for Payton. THANK YOU SO MUCH! There is a ton going on lately, but we are hoping to have our literature ready for mailing soon!!

Name:: Betsey Carlisle
Email:: betseycarlisle@yahoo.com
Date:: 10/29/02
Time:: 09:18 PM

Comments

Hey Debbie and Payton and pals. I caught up with you a little Debbie on the other site and I wanted to let you know I do think about you and the family. I admire what you are doing for the future of sma kids. People used to say they admired me and I didn't know what for. I didn't do what you're doing. I just lived with Conner and tried to care for him. You are doing so much more. As people used to tell me, please hang in there and know that you are SO supported. I used to feel guilty for a lot of things-don't know why. I hope you don't. Lots of love, Betsey (Conner's mommy)

Name:: Marty & Shelley Offenther / SB&J Ent.
Email:: Promomarty@aol.com
Date:: 10/30/02
Time:: 04:36 PM

Comments

What a GREAT SITE....Rob Deb & Payton... We just want you to know that there are many people out here (in cyberspace) who recognize your INCREDIBLE strength and courage . We also feel your pain and anguish. You are very SPECIAL PEOPLE !!!

Name:: Debbie
Email:
Date:: 10/30/02
Time:: 07:42 PM

Comments

Thank you so much Marty and Shelley and Betsey too!! It means so much to hear from people on the website and know that you are rooting us on.. Sometimes we feel lonely but it is never for long with so many great people that really do care so much.. Thanks guys.. We are excited to be celebrating Roberts 35th Birthday tomorrow--Yes, he is a Halloween baby. :) He loves his birthday so we always look forward to celebrating with him and we are taking him and Payton to the movies tomorrow to celebrate!! HAPPY HALLOWEEN EVERYBODY!! Have a safe and happy holiday and be careful out there!! Eat lots of candy and have fun!!

Name:: Lisa
Email:: lisa_mattiocco@yahoo.com
Date:: 10/31/02
Time:: 07:57 PM

Comments

Hi Payton, It's Lisa and Joe in NJ and we just want you to know your in our thoughts. We think your new website is really great and pray that it serves it's ultimate goal in raising the money for finding a cure for you and your pals!! I'm very happy to hear all about how much you are learning, thats very exciting stuff!! Hugs and kisses to you!!!! Hi Deb, Hi Rob (Happy Birthday to you, Robert). I also just want to say to you Deb, Rob, Roz, and everyone involved keep up the great work because of you, your hardwork and determination you are making such a difference in this fight against sma. You are all Awesome!!!

Name:: Shan
Email:: SBeatty195@aol.com
Date:: 11/02/02
Time:: 10:57 PM

Comments

Hi Guys ~ Just a quick hello & let you know you're in my thoughts. Happy Birthday Rob ~ You Old Fart You!! Hope all's well. Miss you xoxo Luv, Shan

Name:: Anissa
Email:: jat69er@myacc.net
Date:: 11/04/02
Time:: 01:17 AM

Comments

Hey Guys, We really had a lot of fun at Rob's B'day Party the other night. It was great. You guys looked so cool and it was nice to be able to spend time and catch up with you all. Kiss little Payton for me. Anissa

Name:: Debbie
Email:
Date:: 11/04/02
Time:: 02:31 PM

Comments

PLEASE REMEMBER TO VOTE TOMORROW EVERYBODY!!!! I could go on and on about why and who to vote for, but if you keep up with politics AT ALL you KNOW who to vote for!! Please help us make change for kids like Payton all over florida!! CMS, Medicaid, and all of the services that help pay for the EXTREME expense of handicapped children have been cut back and cut back to the point that they even try to skimp on things for children as compromised as PAYTON! These children NEED HELP!! Politicians who do not care about these children and their needs will continue to cut back to the point where they will have NOTHING. This is why there are SO MANY charitable groups out there trying to help!! BECAUSE THE FUNDS ARE JUST NOT THERE!! SO, PLEASE, VOTE TOMORROW!! EVERY VOTE COUNTS!!! THANKS!! We had a crazy weekend, with Halloween, Robs' b-day, our anniversary, etc.. but all went very well and Payton was so handsome dressed up as Buzz Lightyear for Halloween. We took him to see Veggie Tales the day of Halloween and he LOVED it! He got lots of candy halloween night and even though he won't eat it, he seemed to be pretty happy to just cruise around the neighborhood. :) We have sent out our Bloomies invites so if you DID NOT get one let me know RIGHT AWAY!! I will make sure that you do!! We are really looking forward to the Cropathon this weekend and are very excited to see how things turn out. This will be something that we can do annually and scrapbooking seems to be quite popular so hopefully it will just get bigger and bigger!...... Payton has been great and he seems to be more interested in communicating with me than EVER before. VERY exciting stuff. He had SO MUCH to tell me last night and was saying yes, he wanted me to kiss his nose and yes, he wanted me to kiss his eye, but NO, he did not want me to kiss his thumb or his elbow.?? He was very cute. Talk Soon.

Name:: Wanda Dodaro
Email:: wdodaro@yahoo.com
Date:: 11/05/02
Time:: 11:36 AM

Comments

Hello Deb, Rob and Payton, just stopping by to see how you all are doing these days. Sounds like payton is really doing well, love the "NO" and "YES" to the kisses, very cute, what a little man he is:-). You guys are doing such a great job with all the fundraisers, WOW! Wanda~Mom to Samantha almost 3years old SMA type 1.

Name:: Edma Beauplan
Email:: haitian4life509@yahoo.com
Date:: 11/08/02
Time:: 02:16 PM

Comments

I will pray for you and I will always love you payton

Name:: Dionne Ryff
Email:: dryff@alliedadvpub.com
Date:: 11/12/02
Time:: 03:25 PM

Comments

Just wanted to let everyone know that the 1st ever Payton's Pals 26-hour Crop-Around-The-Clock-A-Thon was a success!!! Our final intake will be over $2,500.00!! Not too shabby for our first foray into the crop-a-thon world. We had 7 brave overnighters and a handful of evening and daytime croppers and a great time was had by all! We are already in talks with the Scrapbook Den to host the 2nd ever next summer sometime...(only next time it will be more like a 14 hour Crop-A-Thon...I think that will open it up to a lot more participants...) Thanks to everyone who participated and to all of the people who sponsored the participants. Next time, we will hopefully have more time to get some big publicity on the event and draw in 2x more than we did on the 1st ever!!!! And don't forget about the Bloomingdale's (at Boca Town Center Mall) Payton's Pals Charity Shopping Day THIS SATURDAY, 11/16 all day. 10% of our groups' total purchases will be donated back to Payton's Pals -- Bloomingdale's gift certificates for everyone this holiday season!!!!! They will also host a wine and cheese reception for us (I believe from 6p-7p.) Spread the word! The more, the merrier!!!

Name:: Debbie
Email:
Date:: 11/17/02
Time:: 11:02 AM

Comments

Hello out there! I want to send out a huge THANK YOU to all of the people that came out on Thursday night to our scrap in a snap party and to all of you that came out to Bloomingdale's to shop yesterday. It was great fun to crop over at Leeanna's. We will hopefully plan another crop fundraiser soon, as they are SO MUCH FUN!! I love getting my pics together in a scrapbook. They look great... Yesterday was a little hectic with the shopping crowd at Bloomies, but all went well and we are just hoping that we had a big enough turnout to qualify for the donation. We had to bring 75 registrants to bloomies, get them up to the third floor to sign in, have them come back up and turn in their receipts after shopping, and then 10% of the proceeds of those purchases would go to Paytons Pals. So, keep your fingers crossed that we had enough people! We are taking a complete break from fundraising until after January. That is when we will begin work on the spring benefit in June, and we, all of us volunteers, are pretty tired.. It has been a very eventful year with fundraisers almost every weekend for a while there, but we are taking a much needed break. THANK YOU to all of you that have volunteered your time this year, and SPENT YOUR MONEY on our cause. We WILL FIND A CURE FOR SMA and WE WILL MAKE A DIFFERENCE thanks to all of you! Take care!! P.S. Payton is doing great and trying very hard to start talking!!!

Name:: Debbie
Email:
Date:: 12/02/02
Time:: 05:19 PM

Comments

Well, we are in the middle of sorting through tons of pics and trying to get them onto the website asap. I know how much everyone wants to see PICTURES! And I am sorry it has taken this long to start working on them but I am sure you can imagine sorting through a years worth of pics! Laura should receive them soon, and they should be up as soon as possible!! I am very proud to announce that we have made our first and second purchases as a non-profit organization!! We purchased a back-up battery for a family that DID NOT HAVE ONE!! and we also just purchased the Tiger 2000 chair for a family that was unable to get one through insurance. We won't be able to do anything like this again until next summer, but what a thrill it is to be able to help our fellow sma families!! BIG HUGE THANKS goes out to all of you that helped us raise these funds, without all of you it would not have been possible!! This includes EVERY garage sale, car wash, crop-a-thon, shopping excursion and neighborhood sale we have had this year!! Everyone's help has brought us to this point and we will continue to CONQUER as much as we can in this fight against Spinal Muscular Atrophy... Hope everyone had a WONDERFUL Thanksgiving! Payton had a great day at grandma's and grandpa's and we all had too much turkey! I am also looking for pics of Paytons sma friends out there. If any of you could email to Laura any pics at all, I would be very grateful. We want to have pages of "Paytons Pals" on this website. It is the reason we came to be known as we are. Laura's email is laura@our-sma-angels.com Thanks so much everyone! We will soon be starting work on our THIRD ANNUAL BENEFIT IN JUNE!!! SEE YOU THERE!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Name:: Shan
Email:: SBeatty195@aol
Date:: 12/03/02
Time:: 03:08 AM

Comments

YEEEEEEE~HAW!! Way to go Payton's Pals! Gosh how I love to hear that you have helped another SMA child & family. It's so truly amazing what can happen when people pull together for a common cause. You've done it Deb ~ made your idea into a reality! There's no stopping you & the Payton's Pals gang now! Know you're in my thoughts daily. I truly miss you my friend & would love a day of catching up & girl talk! BIG SMOOCH to Payton for me please! Love you, Shan xoxox :)

Name:: Mike Murphy
Email:: Murphdog0352aol.com
Date:: 12/04/02
Time:: 10:43 AM

Comments

Hey Miss Deb, Rob, and Super Trooper, Kudos on the purchases.....how fortunate those families are to have someone like yourselves. It's Just always refreshing to hear about someone standing up and doing the good fight. Especially in a world where it seems everyone does more than there fair share of bitching but no producing. Awesome job guys and keep it going. Good to hear Payton had a great Thanksgiving. Well off to do some errands, talk to you guys soon. Michael Murphy

Name:
Email:: ginafimbel@yahoo.com
Date:: 12/05/02
Time:: 02:03 PM

Comments

Debbie, That is such amazing news! Congratulations. I don't see how you do it. You and Payton are touching lives and it doesn't get any better than that. Good luck with everything! Love, Gina Fimbel

Name:: Debbie
Email:
Date:: 12/06/02
Time:: 04:03 PM

Comments

Hello out there!! Thank you so much Shan, Michael, Gina, and all of you that have written me emails about our first purchases for sma children!! Believe me, it is quite a thrill to be able to help in any way to make quality of life better for a child suffering from sma. As most of you know, things can get real tough in this fight, and we look forward to helping SO MANY children in the future!! We have been going over many ideas for the future and if any one has an idea or just something they want to share, please email me at pjf714@netscape.net I would love to hear any feedback at all!! Thanks again, and hopefully little Crystal will soon be taking trips outside the HOUSE!!!

Name:: michelle
Email:: aworrell@columbus.rr.com
Date:: 12/18/02
Time:: 09:15 AM

Comments

Hey Freemans and all the volunteers of Payton Pals - Have a great holiday and hope for a cure for the New Year.

Name:: Debbie
Email:
Date:: 12/18/02
Time:: 06:52 PM

Comments

YOU GOT IT MICHELLE!! I can't think of ANYTHING better to wish for!! We are so close, I know it, and I pray that it comes in time to heal SO MANY sma children!! Crystal will be recieving her new TIGER 2000 tomorrow! We are so excited, I will let you all know how she likes it!!HAVE A GREAT HOLIDAY EVERYBODY!!! P.S. If anyone has any innovative ways to deal w/the bipap mask rubbing against the bridge of the nose, please let me know right away!! We are trying to get Paytons' to heal and having the hardest time w/it as we must constantly put the mask back on. Thanks in advance!!

Name:: Debbie
Email:
Date:: 12/20/02
Time:: 09:52 AM

Comments

Hello out there!! Just wanted to let everyone know that Crystal got her BRAND NEW TIGER 2000 yesterday and her family was THRILLED!! It is such a nice chair, with all the bells and whistles, and it should last them at LEAST til she's two, and then they can just upgrade the seat instead of having to start all over!! Well, it was a very exciting day and I hope Crystal enjoys plenty of outings in her new chair! We are talking about MAYBE getting a couple of nanny-cams for kids that have nursing in the home. We are not sure if there really is a "need" for this, so please email me and let me know if you or someone you know would be interested in such a thing?? We have not decided definitely or not to do this, but any input would help us decide!! Thanks alot and have a great DAY!!:)

Name:: Debbie
Email:
Date:: 12/20/02
Time:: 10:09 AM

Comments

I have just found out after reading the sma support message board and fsma message boards, that 3 more type 1 children have passed this month that we know. On December 2, Saria Clark passed away. On December 15th, Bradley Smith passed away. And on December 18th, Brooke Binning, who was 4 1/2 years old, passed away. Please say a prayer for these families as they have all gone through a tremendous loss this season. Our thoughts and hearts are with them at this time. These childrens' names may not sound familiar to you, but there are thousands of children like them all over the world, waiting and waiting for a cure, and the clock is ticking... PS. You can leave prayers and thoughts at the oursmaangel.com website under Brooke Binning and under Saria Clark, I don't think that Bradley has a website there yet.

Name:: Debbie
Email:
Date:: 12/23/02
Time:: 10:15 AM

Comments

I regret to inform you that another angel has earned his wings.. Marshall Daniel Potter went to heaven on December 22, at 2:13am. I have not spoken to his family but they are in all of our prayers and in our hearts. We are so sorry for their loss...

Name:: Debbie
Email:
Date:: 12/25/02
Time:: 08:04 PM

Comments

MERRY CHRISTMAS EVERYONE!! I hope this holiday finds you all as healthy and happy as possible! We spent a very long, wonderful day with Paytons' grandparents, his aunt Amy, her boyfriend Brian, his great-grandma Helen and of course, mommy and daddy. We had a great day, Payton got TONS of presents and he seemed to enjoy it more than last year! He didn't get quite as mad when we interrupted his movie!! Well, THANK YOU SO MUCH for ALL the cards we received and for all of Paytons' gifts and all the well wishes!! We regretfully were unable to send cards this year w/updated pics but I promise I will next year.... Hope the rest of your holiday is wonderful!! Take care and goodnight!

Name:: Debbie
Email:
Date:: 12/25/02
Time:: 08:13 PM

Comments

P.S. THANK YOU Amy for the BEAUTIFUL PICS of Lily!! I will be sure to put them up on the website!! She is soooooooooooooo ADORABLE!!

Name:: Debbie
Email:
Date:: 01/02/03
Time:: 05:17 PM

Comments

I hope everyone had a nice holiday. I am sorry to inform you that Aiden Joseph White passed away on December 29th, 2002. He was 4 months and 14 days. Our hearts and our prayers go out to his family... I hope this is the year for the cure. WISH US LUCK.

Name:: Debbie
Email:
Date:: 01/02/03
Time:: 05:30 PM

Comments

I would like to ask for your prayers for Crystal Cevallos. She is doing better but is in the hospital w/a collapsed lung and is intubated. Please keep her in your thoughts at this time. Thankyou.

Name:: Debbie
Email:
Date:: 01/04/03
Time:: 05:24 PM

Comments

Crystal is not home from the hospital yet, but she is doing better, thank goodness! Thanks for all your thoughts and prayers!! And KEEP PRAYING FOR THAT CURE!!!:)

Name:: Debbie
Email:
Date:: 01/05/03
Time:: 10:03 PM

Comments

Unfortunately, Crystal had a rough time yesterday and was re-intubated after extubation. Her family is having a hard time dealing with the doctors in the hospital as they are not familiar w/sma and the protocol of an sma child in intensive care. Please keep her in your thoughts. She is such a trooper and is a very strong type 1 child. She needs a lot of love and support right now as it is so difficult when they must deal w/lung collapse and intubation, the hospital etc.. but she is fighting and hopefully will be well (& HOME) soon. Take care everyone.

Name:: Debbie
Email:
Date:: 01/08/03
Time:: 09:52 AM

Comments

Crystal has been transferred to another hospital as the one she was in was not interested in the protocol of an sma baby in the picu. She is being well taken care of now, but picked up RSV in the last hospital where they had 3 babies w/RSV, and she is still intubated. Please keep her and her family in your thoughts and prayers, they really need them right now.. Thanks.

Name:: Tamara
Email:: tgatorbabe@aol.com
Date:: 01/09/03
Time:: 04:12 PM

Comments

Hey Debbi, Rob and Payton, It's my first time visiting, and I just wanted to wish you all a very happy and healthy New Year for 2003. Payton is a trooper!!!! His incredible strength is a reminder to all of us that anything is possible, especially the impossible. I look forward to participating in the new fund raising activities for 2003. All our love, Tamara, Rafe, and Madison (soon to come Jan 2003)

Name:: Tracy and Skylar
Email:: ourlilsky@aol.com
Date:: 01/09/03
Time:: 06:38 PM

Comments

Hi Debbie, We havent heard much from you lately. How is Payton doing? I wanted to ask you ..We are getting "Skylars Hope Chest" Started and Iwould like to put Paytons Pals on the link page. Is that OK? Hope all is well and give that handsome boy a big hug from us. Love, Tracy and Skylar (SMA1, 2 1/2 yo +1 mo)

Name:: Debbie
Email:
Date:: 01/10/03
Time:: 10:29 AM

Comments

Hi everyone!! Tamara, I hope all is well w/you!! Thanks for coming to Paytons site and give Madi a BIG kiss from aunt Debbie the second you can!! Please make sure Lori lets me know when she is born!! (you might be a little busy!;) ) HI Tracy and Skylar!!! YES, PLEASE do put our link in!! I will put yours too, just leave me the site or link!! I will ask Laura to add it! How is Skylar?? I hope great. I am putting the pic that you sent me a while back up on the pals pics page, but if you have any recent ones I would be THRILLED to have one!!!!!! Thanks!!! Payton is doing great, thank goodness. He is now working on TWO More teeth so he isn't super happy about that but everything else is good. He had lost a pound a couple of months ago and we were a little concerned about that, but we have managed to put it back on and maybe even an extra 1/2 pound w/it! We have started working on our annual fundraiser in June!! Outback Steakhouse will be sponsoring us for our 3rd fundraiser and we will be at the Fort Lauderdale Swimming Hall of Fame this year!! It will be really nice as it overlooks the intracoastal and is just skip away from the beach!! Tickets will be $75 per person again and table donations will be $700 again. (these tables seat 10-12 people) If anyone would like to volunteer or if anyone has any questions or ideas please let me know!! PJF714@netscape.net We are also getting ready to go to DISNEY WORLD!!! This will be Paytons second trip but probably more exciting for him than last year! He seemed to really like the scenery last year but I think this year he will be familiar w/a lot of the characters etc!!! If ANYONE is interested in taking their sma child to Disney, we have pretty much figured the best ways to go about the trip to minimize your stress with your handicapped child and maximize your fun!! We absolutely LOVE this trip and it is the only one we can really ever take anymore so we look forward to it all year!! I am ashamed to say that I have not even put up the pics from Disney last year, but we are "working" on it!:) I really do need at least 10 volunteers to help out AT the benefit on June 7th so if anyone is interested PLEASE let me know right away!!!!! THANKS!!! Take care everyone and keep Crystal in your thoughts!! She is THANK GOODNESS, OFF the ventilator and resting comfortably on her bipap. She should hopefully be well enough to go home soon if all remains well. Prayers needed. Thank you!

Name:: Debbie
Email:
Date:: 01/10/03
Time:: 06:19 PM

Comments

We would all like to send a HUGE BIG HAPPY BIRTHDAY WISH TO MJ PURK!!!! I cannot believe that you are FIFTEEN YEARS OLD!!! You are such a doll, and so good to Payton with all of the wonderful mailings you send to him!! Not to mention the stickers that he LOVES!! Hope your birthday was all everything you wanted and I hope you had a BLAST!! Just think, sweet 16 is just around the corner!!!!!:)

Name:: Debbie
Email:
Date:: 01/15/03
Time:: 05:34 PM

Comments

WOW!! Lots of activity in the birthing business lately!! We would like to say WELCOME!!! to Miss Madison Sage Padgett and Miss Reese Lorynn Withey!!! Both beautiful ladies were born in just the last few days to wonderful parents and we wish you all the happiness and health you can handle!!!!!!!!!!

Name:: Debbie
Email:
Date:: 01/15/03
Time:: 05:35 PM

Comments

Please keep little Miss Crystal in your thoughts and prayers as she is soon to be released from the hospital!! She is such a trooper and has been through quite a bit in the last few weeks. They expect her to be home by the end of the week!! Thank Goodness!

Name:: Debbie
Email:
Date:: 01/16/03
Time:: 10:05 AM

Comments

I am sorry to let you all know that little Sierra Rose from California passed away on Tuesday morning. She was just 9 1/2 months old.. Please keep her family in your prayers..

Name:: Celia & Ta'Bria
Email:: AKACelia@aol.com
Date:: 01/16/03
Time:: 02:11 PM

Comments

To Debbie, Rob, and that very special and adorable little Payton: Ta'Bria and I would like to say thank you for coming into our lives when you did. The site is beautiful. Give Payton a kissy and tell him to tell Minnie & Mickey Ta'Bria said hello. She wants to hear all about it when you return. Fighting For A Cure in Indiana. Connected for life now! Aunt Celia

Name:: MJ Purk
Email:: TWEETYROLL88@aol.com
Date:: 01/18/03
Time:: 01:33 PM

Comments

Hey Debbie and Payton! WOW! Thanks for the wonderful birthday wishes! Yup 15! Can hardly believe it. :) Anyhoo, I'm so glad that you (payton) enjoy the stickers. Sorry, but this month I didn't have time to include (or even make my own cards) stickers! Sorry!!! Don't worry though, next month I'll be sure to include extra stickers for you! (but SHHHHHHHHH don't tell anyone or they might get mad!) :-D Well, buddy I better get going. Tell your mommy to e-mail me ANYTIME, ok? And always remember, I LOVE YOU! Your friend, MJ PS Come and visit my guestbook! go to http://www.our-sma-angels.com/Margaret/

Name:: Debbie
Email:
Date:: 01/19/03
Time:: 03:34 PM

Comments

HI Celia, Ta'Bria and MJ!!! We are so happy to hear from you all!! Celia, let me know if you did not receive those faxes!! If anyone out there has any newspaper articles about sma, or their children with sma, please fax them to me or mail a copy to me, PLEASE!! We are putting together a book with articles for fundraising purposes!! THANK YOU!! We thought that the article in the sun-sentinel (about Payton and Jacob) was going to print today, but we just found out that it will be February 2nd instead! SORRY everyone! We were very excited to see the article (in the SUnday paper no less!!!!) but it will be 2 more weeks til we see it. I will let you know if there are any other changes! Payton just got finished with PT, he is doing really well w/it and w/everything lately (knock on wood!). We are really excited to see him getting a little more stable and not "de-sating" as much as he used to. He also has put on a bit of weight(he lost a pound and we were getting concerned) so we are very happy about that too. He looks healthier w/a little more weight. (he got down to 15 pounds!) He now weighs about 17 pounds. Thank goodness. And we are trying to get him to at least 18 or 19... If anyone has any suggestions please let me know. We just got the Respironics Prolite Gel Mask (thanks WANDA!!) and it is FABULOUS!! If you use a bi-pap you must use this mask. It does not have the pressure that the other masks have, therefore your little angel will not get the HORRIBLE sore on the bridge of their nose that Payton has had for a while now. It is FINALLY healing up but for a while there we thought we were going to need to go the wound care center, because it never had time to heal with him wearing the bi-pap every day. Well, we are SUPER excited about going to DISNEY!!!!! Payton is also VERY EXCITED and believe that he has lost a little sleep over it!! We have toned down the "disney" talk lately so that he can get some sleep!! We have just started working on this years' annual benefit to help in the search for a cure!! It will be at the Swimming Hall of Fame in Fort Lauderdale on Saturday, June 7th and if you need any info or want tickets, etc.. please call or email me!! We are also looking for volunteers for the event itself and DONATED ITEMS!! Please let me know if you have ANY questions at all and THANK YOU FOR ALL YOUR HELP!! LOVE TO YOU ALL!!!!DEBBIE:)

Name:: Debbie
Email:
Date:: 01/19/03
Time:: 03:38 PM

Comments

ONE MORE THING... Our very very very dear friend, Michael Murphy, has been called upon to serve our country in the war against terrorism in Iraq. He will be in Virginia for a month and then he is off. If anyone would like his address please let me know!! WE WILL MISS YOU MICHAEL AND WE WILL PRAY FOR YOU EVERYDAY!!!! Remember, I told you, I don't want not one hair on your head to be harmed!! Payton and Rob and I will definitely send you goodies!!!! Good luck--we love you.

Name:: Sue O'Neill
Email:: TheONeills@our-sma-angels.com
Date:: 01/19/03
Time:: 07:30 PM

Comments

Hi Debbie and All! The Payton's Pals website is looking great! I'm so glad you're journaling again and keeping us updated on Payton and how he's doing. I really missed reading your daily updates! I also like hearing updates about baby Chrystel. I wish I lived closer to you guys--I'd love to be involved in your fundraisers! You're doing a great job, for sure. I admire your strength and persistence in fighting SMA and making strides to a cure. Thank you, Debbie and all your volunteers! On our front, things are good. Casey is loving Kindergarten. He has not missed a day for being sick!!! OH, and Casey will be 6-years-old on January 23rd!!!!! Colin just got over a nasty ear infection and reaction to antibiotics and blood in his stool, but he is doing FANTASTIC now! He is trying so hard to talk. He can say "da", "wow", "uh-huh", "moo", "boo", sometimes "ma" and sometimes, "more". We are very proud of him! Take care, and I'll be checking back often. If you'd like to see some recent pictures, go to www.our-sma-angels.com/oneills under Family Photos page 6 we have some updated photos of us all! ~~Sue~~

Name:: Debbie
Email:
Date:: 01/21/03
Time:: 09:29 PM

Comments

Hi Sue!! Thanks so much for writing! I haven't talked to you in a while!! I am THRILLED that the boys are doing so well!! Do you think it would be ok for us to steal some pics for our webpage?? :) I JUST FOUND OUT that the article in the sun-sentinel about Payton and Jacob will be out on January 26th (SUPER BOWL SUNDAY!!) so please go out and get your Sunday paper next week!!!!!!!!!!! Payton is good, we love all you guys, take care!!

Name:: Debbie
Email:
Date:: 01/22/03
Time:: 11:13 AM

Comments

I am very sorry to let you all know that Bella Porras passed away on January 15th. She was 4 1/2 years old. Please say a prayer for her family...

Name:: Sue O'Neill
Email:: TheONeills@our-sma-angels.com
Date:: 01/22/03
Time:: 04:56 PM

Comments

Sure, Debbie, use any pictures that you'd like! Can't wait to see new ones of Payton. I think I have all of the other ones memorized! Sorry to hear about the loss of Bella. I will keep her family in our prayers.

Name:: Debbie
Email:
Date:: 01/23/03
Time:: 10:58 AM

Comments

HAPPY BIRTHDAY TO CASEY O'NEILL!!! He turned 6 today and we are ALL wishing you a HAPPY and HEALTHY year as a big 6 year old!!! Hope you get all the presents you wanted and have a great PARTY TOO!!!!

Name:: Debbie
Email:
Date:: 01/23/03
Time:: 09:18 PM

Comments

Please say a prayer for the Garza family. Little Jack Ryan Garza passed away on January 19th. He was only 11 weeks old with type 1 sma.

Name:: Shan
Email:: SBeatty195@aol.com
Date:: 01/26/03
Time:: 11:30 AM

Comments

Hi gang!! Just wanted to send a quick reminder that the story about Payton, Debbie and Rob is in today's (Sunday 1/26) Sun-Sentinel in the Health & Family section. They made FRONT PAGE with a large color picture featuring all three of them! Story continues onto page 7-E. Let's keep our fingers crossed that something HUGE will come out of this! The details of the benefit are also included so pass it along. Take care gang! Love you, Shan xox :)

Name:: Tracy and Skylar
Email:: ourlilsky@aol.com
Date:: 01/26/03
Time:: 09:16 PM

Comments

Hi Debbie and Payton!!!! Debbie, I'd be happy to send you new pictures of Sky. Just send me your address. Skylar finally has teeth!! YIPPEEEEE.. She didnt get her 1st one till she was 2 1/2 years old. She has two that are in and about 2 more just about there. Payton reminds me of Sky so much. The way you talk about how he is a "weaker" type 1 and all..so is Sky. She only says a few words..but none can top her favorite..nu-uh. I will add Paytons link to Skylars..which is www.skylarshopechest.com... It is still under construction. Please if you know of anybody that could benifit from a care package let me know. BIG ((((HUGS))) to you all!

Name:: ashley
Email:: holliatl@hotmail.com
Date:: 01/26/03
Time:: 11:27 PM

Comments

I think payton looks like my uncle Rob he smiles like aunt Debbie he is very sweet and full of joy I think he will be smart when he gets older. love Ashley

Name:: Jen B.
Email:: Luckystarr0714@aol.com
Date:: 01/27/03
Time:: 02:49 PM

Comments

Wow... my favorite lil man has become a local star! The article in the paper was great and on the front page of the section too. Awarness about SMA is being spread faster and faster because of parents like you guys.Keep on doing what you do:) Love Jen

Name:: Kimberly Wattman
Email:: kwattman@comcast.net
Date:: 01/28/03
Time:: 02:08 PM

Comments

Dear Payton and Family, Your website really touched my heart. My niece Kerri also has SMA. She is 16 yrs old. My sister tells me a cure is right around the corner. I pray every day that the cure is closer than we think. May God bless you and your family.

Name:: Debbie
Email:
Date:: 01/31/03
Time:: 06:54 PM

Comments

HEYLO OUT THERE! Thanks for writing Kimberly, Ashley(little P's cousin!), Jen B, Tracy and Shan!! Tracy, I think that the pacifier must make a huge difference because Payton sucks on it ALL THE TIME and he has ELEVEN teeth! No, I am not kidding. Eleven. Your link is up on our site and I promise to let you know about newly diagnosed children that I hear about..I definitely agree about our kids. I think Sky looks like Paytons twin. Payton definitely looks more like Sky than any other sma child I have seen. I would guess they are about the same w/gross motor etc.. too. Maybe one day they can get married!!!:) There is nothing I'd like to see more, really.. DISNEY WAS AWESOME!! I really can't express enough how much Payton enjoyed it this year! It was TOTALLY different than last year. Last year it seemed we could have been in Key West and he would not have known the difference. NOT THIS YEAR. First of all, he could barely sleep for a week before we left. THEN, when we got there, he didn't sleep barely at ALL the night before our first day in the park. He must have completely exhausted but still forced himself to stay awake and enjoy the day! He looked pretty rough that day, but you could tell he was determined! He LOVED the fireworks, the parade, the CHARACTERS!! ESPECIALLY Lilo and Stitch!! We thought he might be a little afraid of the characters, but he really wasn't. If anything he seemed pretty intrigued that he was meeting his favorite characters in person! His sats were great all week, and after the first couple of days, he started to sleep better. We got lots of pictures and I would say MGM was his favorite part of the four parks.. The hotel was incredible and could not have been more convenient as it has the monorail going right through it. (the contemporary) They were MORE than accomodating for our handicapped needs and we enjoyed everything right down to the in-house arcade!! Please let me know if you ever need any details on Disney. It is just the BEST trip for a handicapped child to take with virtually no stress (can that be possible?) and the MOST CONVENIENCE for a family with tons of equipment and needs... Hope everyone enjoyed the sun-sentinel article!! We are really ALL ABOUT spreading awareness so we will be trying to do many articles like that one. I am really really going to try and somehow get in to a magazine!! I know that would be pretty big if we could get in one of our favorite magazines!! Well, take everyone and we will talk again soon!!

Name:: jackie
Email:: prncss0413@aol.com
Date:: 02/02/03
Time:: 10:18 PM

Comments

hey guys how are you?what's up deb? i was just clicking on some sites and noticed that you've been writing again. how's everything going? i hope your mom told you that i stopped to visit pay the last time i was home. he was busy watching a movei but i was lucky enough to get at least ten minutes of his attention when he looked up and me to say hi. it's so funny how i feel he recognizes me. i'll be home again this weekend for a soccer game and i would love to stop by and visit again. maybe jim will be able to come too. he was mad that i went without him last time. things are going well in tallahassee just working hard and starting to look for jobs since graduation is right around the corner. well i'm off to the library ( shocker) hope to hear from you soon and i'll be calling you when i get into town. love you miss you xoxoxo hi rob!!!! jackie

Name:: Debbie
Email:
Date:: 02/04/03
Time:: 09:41 PM

Comments

Hi Jack!! I hope that you are looking for jobs down here in SOUTH florida!! We all miss having you around!! Say hi to Jim for us!! All is good. I think that Payton is just now recovering from sleep deprivation due to Disney anxiety!! He really LOVES Disney. It is so cute how he is about that place. I told Robert that we should try to take him again before next Jan!! He is still stuck on Lilo and Stitch!! He just recently let us play Toy Story a couple of times but that was it and it was right back to Lilo and Stitch.. If anyone didn't get to read the article in the paper or would like a copy please let me know!! I would like to say THANK YOU to Kim and Shane that live in our neighborhood and THANK YOU SO MUCH for the Toy Story balloon that you left for Payton!! Surprises like that are so awesome! That was very thoughtful!! Well, take care everyone and BIG HUGS AND SMOOCHES TO RJN!!!!!!!!!!!!!!!!!!!!!!!!

Name:: Jennifer Palmese
Email:: jpnlg@bellsouth.net
Date:: 02/05/03
Time:: 08:28 AM

Comments

Hey Debbie. It's Jennifer. I was just checking out the site. It is very nice. I just heard something on the radio this morning about some inline skating thing going on in Miami and they said that all proceeds to go SMA. Do u guys have anything to do with that? Well, I am glad that everything is going good and hopefully it will continue to be that way :) You guys deserve the best because you are the best to Payton. I look forward to volunteering again in June at the fundraiser. Talk to you soon. BYE BYE

Name:: Debbie
Email:
Date:: 02/06/03
Time:: 05:39 PM

Comments

WOW!! THANK YOU LAURA STANTS FOR ALL THE WORK YOU HAVE DONE ON THIS WEBSITE!! YOU ARE AMAZING!! If any of you out there are in need of a great website designer please contact Miss Laura at laura@oursmaangels.com !!! She is the best!! We have started working on a ton of fundraising "stuff" and are already getting ourselves organized for the event in the spring.. If you would like to volunteer at the benefit or would like to help in some way but don't know how, please contact me at 954-935-6025.. We really need lots of help and lots of volunteers to make this event successful so let me know!! We have received a huge response from the ad in the sun-sentinel and hope that it will impact our benefit in June!! Also, if you know of ANYONE that could/would donate goods or services to our silent/live auction, please let me know! I can contact someone or send more information--whatever needs to be done, so please let me know if you have any ideas!!! Thanks and take care everyone!! Payton is very busy right now watching Lilo and Stitch so I think I will join him for a bit!!:)

Name:: Debbie
Email:
Date:: 02/07/03
Time:: 02:39 PM

Comments

If any of you out there are sma moms or dads, please email your childs' name and type and birthday to Helen Baldwin (she is putting together a great book with very important statistics,etc..) at jeffreyb@skybest.com Thank you very much!!!!

Name:: Shan
Email:: SBeatty195@aol.com
Date:: 02/10/03
Time:: 10:29 AM

Comments

HOLY SMOKE STACKS ~ the site looks absolutely wonderful! I luv the new layout ~ Totally professional WAY TO GO LAURA! Just a quickie to say Hi to Deb, Rob & Lil'P! So nice to talk w/you the other night Deb ~ I miss you! Stopped down to Hurricane Racing Friday night to see the Dale Earnhardt Sr. Tributer trailer & 1 of his cars ~ spoke w/Mark the owner who said he would luv to donate again this year AND he would really like to help run the silent auction. He has some GREAT ideas to make it even more of a success!! How cool is that! I'll send you his phone #. Well Mama I'm off to the post office. Let's plan on getting together soon! Smooches to Payton Love,Shan xoxox :)

Name:: Lisa
Email:: lisa_mattiocco@yahoo.com
Date:: 02/11/03
Time:: 12:52 PM

Comments

Hi Guys, The site looks terrific, Laura is doing an amazing job designing it. I am glad to hear about Payton's trip to Disney, it sounds like he had a great time!! When you get a chance send me the article from the sentinel and of course a few updated Payton pics would really make me smile. Kisses and hugs to you, Rob and Payton. If you see my big brother give him a kiss from me for his bday. Talk to you soon.

Name:: michelle
Email:: aworrell@columbus.rr.com
Date:: 02/12/03
Time:: 01:00 AM

Comments

WOW I love the site. It looks great. Love the Disney stories ---- way too cool. Glad to hear you all had a great time. There is nothing like the magic of Disney to get the blood pumping. Did you see Bear in the Big Blue HOuse show at MGM. My all time favorite there. Madison loves the castle and Tinker Bell flying down from it. Actually Madison loves everything Disney. You might have to change Payton's Pals pictures to Payton's chicks there are a lot of good looking girls on there. One last thing can we donate a national champion buckeye item to your auction?

Name:: Debbie
Email:
Date:: 02/12/03
Time:: 11:49 PM

Comments

Hi SHAN, LISA and MICHELLE!! ABSOLUTELY WE WILL TAKE A NATIONAL CHAMP ITEM FROM THE BUCKEYES MICHELLE!! That would be fabulous!! Shan, I think I need Marks' # or address so I can go see him or chat about the auction stuff!!! Thanks for going by there and hooking me up with him!! Lisa, I will definitely send you a pic and a copy of that article! We are just now sending that article to some different television productions that would find Paytons (and many others) fight against sma newsworthy, WISH US LUCK!! National attention could be HUGE for us!!:) We are getting started working on this years benefit in June--very exciting stuff!! If you need any donation letters, please let me know asap.. I just finished printing them up!! We are going to do a car wash next month, and we will have a scrap in a snap (scrapbooking) party on April 3rd! If anyone is interested in attending or volunteering let me know!! We just ordered the new "Paytons Pals" pins for the event, so if you would like one, please email me!! I am very excited about getting the new pins! Rob is going to make lots of T-shirts for the benefit and some childrens tees and sweats too. If there is something specific you would like to see at the benefit (i.e. a toddler outfit) let me know that too!! Well, I would love some snail mail pics of any sma children that I could add to "Paytons Pals Pics!!" so keep on sending them our way!! P.O. Box 667498 Pompano Beach, Fl. 33069 Thanks everybody and take care and to all the sick kids out there, we are praying for you every day............HOLD ON... we are close....

Name:: Phyllis Beresin
Email:: phyllisberesin@earthlink.net
Date:: 02/18/03
Time:: 10:20 AM

Comments

Dear Payton - I am so glad that you have such a wonderful mommy and daddy who love you more than anything else in the world. I read you story in the Sun Sentinel and think you are the most beautiful courageous little boy I have every seen. So many people love you and are thinking good thoughts for you. I hope you know that. I wish there was something that I could do to help besides making a contribution. May the Good Lord bless you and keep you.

Name:: Debbie
Email:
Date:: 02/18/03
Time:: 10:30 AM

Comments

WOW... What a weekend!! First I want to say HAPPY BIRTHDAY To MY DAD AND TO MY SISTER IN LAW HOLLI!!!! We had a great time this weekend celebrating both birthdays!! Also, we were thrilled to see our new neice Reese get baptized on Sunday--she was quite beautiful in her most amazing confirmation dress and she wowed us all with her BEAUTIFUL blue eyes, just like Jamies' and her peace and calmness during the whole ceremony!! She didn't even make a peep and the pastor(?) was carrying her all over the church!! We ALSO had the pleasure of attending the first ever "for the love of Jacob" fundraiser and we had a really nice time. It was wonderful to see the support group that Shaina and Adi have (there were a TON of people there) and it was also very nice to meet them and see just how caring and supportive they are of our fight against sma. We are SPREADING THE WORD!! I am not sure how much they raised for research yet, but I know it was quite successful. My wonderful MIL, Roz, and my SIL, Holli, were also able to test for carrier status at the University of Miami while they were here. We will find out the results in about a month... So far, all of the siblings have tested for sma carrier status except for Holli and all of us have tested positive.(5 of 6) The odds are always 50% (when one parent carries the gene) to be a carrier but so far all of us have been positive. My mom has 5 sisters and 2 of them have tested. One has come back positive and one negative.. My sisters fiance, my brothers wife, and Robs' brothers wife have all come back negative... AND, 2 of my cousins (of child bearing age) on my moms side have tested negative for the gene (their mom (my moms sister) has not tested yet)... Obviously, my mom tested positive.. My dad did not.. My maternal grandmother did... This info is usually considered very personal and confidential but since carrier status is NOT a death sentence and SMA is, I want people to know just how prevalent it is.. 1 in 40 carriers could be considered EPIDEMIC status. If being a carrier meant anything harmful, it WOULD BE EPIDEMIC status. SO, if sma is in your family, please get your family to test.. Lets let the world know that SMA is really out there and not just some RARE disease. SMA IS NOT RARE. Lets talk about it, get the word out. We can all help save lives by doing just this simple thing. GET TESTED!!! Let the researchers do a better job and get the funding they need by getting the genetic statistics out there!!! THanks everyone, and for those of you that would like to test, but do not have sma in your family, please let me know or email me. We are planning a HUGE project to get the public involved in sma carrier testing!!!!! We have a meeting with our board tonight where we will discuss the proposal sent to us by the University of Miami. If it all goes through, I will get more detailed with it later and let everyone know just what we are up to.. I know that we are so close to a cure and we must raise a ton of money to be able to afford the "cure" or treatment, so we MUST spread awareness about this disease. We MUST let people know we are here, we are passionate and we need their help. If ANYONE has any ideas or someone they think I should talk to or write to please let me know. We are on "the campaign trail" and we need everyone to work together to make this happen!! It is very simple, spread awareness, raise lots of research funds, save THOUSANDS OF BABIES & CHILDREN!!!!!!!!!!!!!!

Name:: Debbie
Email:
Date:: 02/20/03
Time:: 11:44 AM

Comments

This is what I need you guys to do... If you live in the state of Florida, I need you to call either: Senator Bob Graham @ 202-224-3041 (health aide is Jocelyn Moore) or Senator Bill Nelson @ 202-224-5274 (health aide is Scott Aaronson) and when they ask who you are, tell them: "I am a constituent from (name of your city) and I am calling on behalf of Families of Spinal Muscular Atrophy, a member of the SMA coalition." Then, when you get the aide or their voicemail, tell them: "I am (your name) and I am from (your city and state) and I am a constituent that is calling on behalf of all the children suffering from sma and that have died from sma. I want to know if you will co-sign Senator Corzines' letter to the NIH in support of research to help develop treatments and a CURE FOR SMA!!" Tell them you need an answer!!! THANKS EVERYBODY!! IF you live in a different state, but would like to bother your senators for us, please email me and I will send you the names, addresses and phone numbers of the people we need to annoy!! Remember, the squeaky wheel gets the oil, so if we all make enough noise they WILL take us seriously and they WILL request more funds for research and WE WILL SEE A CURE FOR SMA!!!!!!!!!!!!!!!!!!!! Thank you!!!!!!!!!!!!!!!!!!!!!!!!

Name:: Debbie
Email:
Date:: 02/20/03
Time:: 11:47 AM

Comments

Dear Phyllis, I just read your journal entry! Thank you so much for taking the time to visit our site and to write!! We are working hard to spread awareness and your entry reminds me that it is actually working!!!!!!!!!! THANK YOU!!!!:)

Name:: Debbie
Email:
Date:: 02/23/03
Time:: 12:27 PM

Comments

We would like to wish KALAIR MYRICK a very HAPPY THIRD BIRTHDAY!!!! Kalair is a type 1 sma child and her mom has pretty much mastered nutrition and the "AMINO ACID" diet!! Thank you Liz and Kalair (and your grandma too!!!) for all of your dedication to sma, our children and for sharing such valuable information on a daily basis with so many families.. You are true inspirations to so many people that you have touched within the sma community without even realizing!! SO, HAPPY BIRTHDAY KALAIR!!! What will yo do for your third birthday??? Payton will be three on July 14th but we are not sure how we are going to celebrate yet! Take care out there!!!

Name:: Debbie
Email:
Date:: 02/24/03
Time:: 11:47 AM

Comments

Hello out there!! We are working feverishly on our benefit details and trying to get auction items donated, etc.. so if you know anyone that would like to donate an item or service to the auction please let me know!! I have all the tax ID information that you will need, etc...! I didn't have a nurse last night and I had to work alot this past week (including last night and today too) SO, I am a little tired.. We had a WONDERFUL time at Amy and Anthonys' wedding on Saturday!! It was a long drive but you don't get to see good friends get married every day, so we made the trip and it was well worth it! Amy was so beautiful and I was in tears when she said her vows. (She was crying too.) And seeing Bradley and Angela and Peter and Judy and Ron and EVERYONE from the Ratkowski gang was such a treat!!! ESPECIALLY Bradley!! I cannot believe how you have grown!! If any of you did NOT get to read Paytons' article in the sun-sentinel and would like a copy please email me and I will send you one!! We got a ton of extra copies!!:) Also, if you have moved recently or know of anyone that I should invite to the spring benefit, please email me addresses!!! THANKS EVERYONE!!!! :)

Name:: Jennifer
Email:: jp954@hotmail.com
Date:: 02/24/03
Time:: 03:10 PM

Comments

Hey Debbie. It's Jennifer- Sari's daughter. I still never got to see the article about Payton yet so when you get a change please email it to me :) I hope everything is going okay. Give me a call whenever you need any help setting up anything for the banquet. I am at your service. Talk to you later. Say hi to Payton for me. Jennifer

Name:: Debbie
Email:
Date:: 02/25/03
Time:: 12:34 AM

Comments

Jennifer, thank you and I will keep in touch and send you the article... I saved a ton of them through Jenn H. over at the sun-sentinel and I will call you soon...

Name:: Debbie
Email:
Date:: 02/25/03
Time:: 12:47 AM

Comments

It is with tears in my eyes that I must let you all know, that Ryan James Nolan has passed away. He passed away in his mother and fathers' arms this morning just before 5am and he was just 5 1/2 years old. Words cannot express to you the pain and grief that we are feeling for his family, for Regina and Jim, and for little Ryan. I will write more later about the details of the viewing on Wednesday and the funeral on Thursday but if you would like to send an email to Regina her email is RegNolan@aol.com I really am just completely distraught over this tragedy and while I know that Ryan is in a better place, there is a whole in my heart. I love you Ryan. Payton and Rob and I and Paytons grandma and grandpa will always love and miss you and cherish your memory.... I can't explain to you guys how incredibly painful this is, please help us in the fight against sma.

Name:: Debbie
Email:
Date:: 02/26/03
Time:: 11:45 AM

Comments

Tonight their will be a viewing for Ryan Nolan at the TM Ralph Funeral Home in Plantation from 5-8pm, please email me or call me (954-935-6025) for directions... The funeral will be Thursday at the Plantation Community Church at 11am. Thanks to everyone that has written in concern for Ryans' family. They are obviously grief-stricken with the loss of their precious little boy... It is very difficult for Regina right now, but she is planning on putting up a website for Ryan and his life, so that you can see just how alive Ryan was, full of life, and healthier than you could have imagined, due to the incredible care of his family, especially Regina. She is an AMAZING mother, who commited her ENTIRE existence to raising and caring for Ryan and making sure his quality of life was the best it could be and she did just that. For 5 1/2 years. Ryan was her best friend and they spent many many many days together doing whatever Ryans' heart desired.. We miss you and love you little man....

Name:: Amy Barnett mom to Lily and Nathan
Email:: lilynnathansmom@aol.com
Date:: 02/26/03
Time:: 02:12 PM

Comments

Debbie...my heart is broken for Regina's and Jim's loss. I KNOW what they are feeling and I am so terribly sorry right now and of course there ARE no words to say...please know I will be thinking about them right now.

Name:: Amy Barnett mom to Lily and Nathan
Email:: lilynnathansmom@aol.com
Date:: 02/26/03
Time:: 09:36 PM

Comments

Ok Deb...I have been "out of the loop" for a while now so I decided tonight to read up on the journal and find out WHAT is going on with Payton's pals..I am very impressed! You guys have done a FANTASTIC JOB with all of this! It was great to catch up on the journal and to read all that Payton has going on his little world...I read a few of the entries to Lily as well who just smiled then her eyes darted back to watching her beloved Oswald...LOL...thank you for ALL that you do! YOU guys are amazing! Please give Payton a HUGE hug and kiss from us and WE WILL make it to Florida (if I could come RIGHT NOW I would be there...it is so freakin cold here) I promise!!!! My parents have ALREADY promised me a trip there!!!! Lily sends hugs and kisses and while her heart "belongs to another boy named Colin O'Neill" she still thinks Payton is quite the hottie BUT we DO need MORE PICTURES!!! Your as bad as me :) Hugs to you guys and keep up the great work you all are doing.

Name:: Debbie
Email:
Date:: 02/26/03
Time:: 10:36 PM

Comments

I have always been one of those people that likes to solve problems. I like to fix things, or help people figure out the best way to go to make their life easier, happier, healthier and just plain better. My friends will tell you, they can call me with the worst of circumstances and I will figure out or come up with some way to make it right or go the way they would like.. Debbies' advice...This is not real life. Real life is not something you can manipulate, no matter how hard you try.. I would have done ANYTHING to keep Ryan Nolan alive and well, if not for him, for his parents. It is so incredibly painful to see him lying there.. His parents only feet away, aware of everyone and everything that comes within inches of him, just like when he was alive... And saying hello to everyone and being SO STRONG. SO STRONG... He is a true angel and I am sure that whereever he is, is better than here, but those that loved him have suffered GREAT LOSS. To see Jim and Regina and know what they must be feeling and feeling that there is NOTHING we can do to give Ryan back to them is more than difficult for me. I have no words, no profound statement, no way to give them what they have lost, I can't fix this or solve this problem. IT is OVER. There is no more Ryan on earth to help save. It is too late. SMA has claimed another helpless, beautiful, little innocent victim. Well, I can barely even breathe thinking about it... I looked in that coffin and just started bawling as I said to Robert "he should be in Disney World, NOT in a coffin..." We must go on with the fight against sma, in Ryans' memory and all of the other little children and babies that have suffered this terrible, senseless, tragic death. We love you Ryan... See you tomorrow...

Name:: Debbie
Email:
Date:: 02/26/03
Time:: 10:38 PM

Comments

Amy, I have not forgotten about you, I let the Nolans' know everyone that has written or called and they are very thankful for their sma family.. If it wasn't for all of you, we would not have the time with our children that we do.. We love and respect you all, this is so so so terrible that we must all fight this fight together. We need each other.

Name:: Debbie
Email:
Date:: 02/27/03
Time:: 07:20 PM

Comments

Well, what a day... The funeral for Ryan was at 11am.. It was quite beautiful.. I had never been in a church like that, where both sides were completely open with windows. It seems that Ryan would have liked that church as he loved the outdoors and LOVED being outside! They read a few scriptures and then talked about Ryan--his likes, his dislikes, how he knew roads and when to turn right or left depending on where you were going (the duck pond or toys r us), how he loved the outdoors and cookie monster and how he LOVED his mommy and daddy and grandma and aunt Millie and all his aunts and uncles and his COUSINS!! He loved his trip to New York in Novemer and LOVED the snow.. He didn't want to stop playing in it, even when Regina wanted him inside.. And how SMART he was.. This little guy could manuever a computer better than most of the adults I know!! Ryan was REALLY REALLY smart, not just because I say so, ANYONE will tell you that knew Ryan how incredibly smart Ryan was.. He could read and write and SPELL!! He was amazing.. Ryans' aunt Millie stood up and through great strain she held back from completely bawling her eyes out because she said that Ryan would not have wanted her to cry.. She thanked God and Regina and Jim for bringing Ryan into the world and for letting her be a part of Ryans' life and I think that EVERYONE in that church agreed.. There were many people there and on the way to the cemetery the police presence completely SHUT DOWN 441 from Broward to Our Lady Queen of Heaven where Ryan was buried.. The police were incredible in their support of one of their own.. The small service at the gravesite was short and very painful... NOTHING seems right or normal about a little tiny casket and cookie monster balloons and BURYING A FIVE YEAR OLD...The two(death and youth) are just not supposed to meet each other.. But, it was a beautiful day out and the wind was just right so that when the family released their white/blue balloons to release Ryans' spirit, EVERYBODY felt it.. Very intense for all of us, knowing that this was the final part of Ryans' day, Ryans journey here on earth... We spent the rest of the day with Ryans' family at the Nolan home and we felt close to him being near all of his MANY videos, books, clothes, pictures of him everywhere and beautiful flowers everywhere too, all of his balloons, his equipment(computers, etc..) and even the bipap.. Words could never do justice to express Ryans' life, but I hope you have some small idea of what a SPECIAL, PRECIOUS AND *QUALITY* LIFE THIS WAS of Ryan Nolan. He will remain a huge part of our hearts for as long as we live and of all the people that I can't wait to see when I get to heaven, he is on the top of my list. Please pray for their family and for Ryan..

Name:: michelle
Email:
Date:: 02/28/03
Time:: 12:23 AM

Comments

debbie - i am so glad you shared how ryan made his life a quality life for him and his family. ryan has been an inspiration to our family - he is a true hero. you are right he had accomplished alot in his short life - he has shown us all that you can do anything when you love life. ryan will be missed by all of his sma family.

Name:: Amy Barnett
Email:: lilynnathansmom@aol.com
Date:: 02/28/03
Time:: 12:59 AM

Comments

WOW Deb is all I can say...it is amazing how such a little guy can touch a life in such a way. Ryan IS a hero...there will never be a "was" in that, he will continue to be a hero and a true fighter in every sense of the word. Reading what you wrote about his quality of life is so inspiring....MANY of us who are able to walk around, eat, and do all those things DO NOT have the amount of love and life that our little SMA children have. As hard as it is to lose something and someone so precious..it is just the start of another GREAT adventure for them..I can't imadgine the joy that Ryan must feel right now being able to take those steps, being able to eat as much ice cream and cake that he wants....but no matter WHAT it isn't right and his reward will be GREAT for what he has taught ALL of us in this life...our precious children teach us SO MUCH about life and what it is REALLY about. Ryan (much like my son Nathan and my daughter Lily) has taught me SO MUCH about what TRUE life is all about and that is why our kids are TRUE HERO's in every sense of the word....my heart remains broken for the Nolan's, knowing the grief that I went through makes it that much harder to see others go through that grief as well. They will continue to be in my thoughts and prayers each and every day. I found these 2 quotes from a long time ago that someone sent me...one is this "If I die, and go somewhere far, I'll write your name on every star, Just so the angels could look up and see How very much you mean to me." The other one is... "When you lose someone you love, you gain an angel whose name you know." I know there are many more that I have stored away but these are the 2 I found....hugs to you all.

Name:: Jennifer Haws
Email:: jenpaws@yahoo.com
Date:: 02/28/03
Time:: 04:36 PM

Comments

Anyone who is reading this cares about all of these children affected with SMA. They CANNOT survive without a cure. We will continue to fight this terrible disease, (in honor of Payton, in memory of Ryan, Jacob and all other children who have passed on), so that a cure is found and sma children can live a healthy life. With your love and support, we can conquer this! If you can help in any way, have any suggestions, want to volunteer, or know someone who can donate things for our live/silent auctions, let us know! There are no words to describe the tragic death of a child; My thoughts and prayers are with you, Regina, Jim, Ryan, and his entire family/friends. Love to all, Jennifer

Name:: Jim & Regina Nolan
Email:: Regnolan@aol.com
Date:: 03/01/03
Time:: 12:01 AM

Comments

Dear Debbie, Rob, Payton, Grandma & Grandpa: We are so grateful to you all for being there for us and showing your love for our son. Debbie, thank you for speaking of Ryan with so much love and for always being there to listen to my endless complaining...Thank you all that have emailed us with so many loving words that are part of what is helping us face each day or I should say hour. We cannot express with words the amount of pain and sadness that we feel. Yes, we know Ryan is with God and finally cured and able to do all of the wonderful things a 5 yr old should do and that gives us comfort, joy and peace, but there is such emptiness in our home and we long to see and hear our Ryan. Anyway, thank you all and we hope to make Ryan proud by continuing our mission to help find a cure. Blessings to all. Debbie give Payton a huge kiss from us.

Name:: doreen lynch
Email:: dlynch03@yahoo.com
Date:: 03/02/03
Time:: 09:25 AM

Comments

I want to say how truly touched i was by your story. Your little trooper is absolutely adorable and definitely a real angel in disguise. My sister-in-law Paula works for Positive Image and she had told me about Payton and i asked her for the website information. My prayers are with your family. It sounds like you are all FIGHTERS and if there is any way to "beat" this thing you and Payton will be the ones to do so. I had to laugh when reading the journal how Payton will get your attention with his breathing, he sounds like he is definitely in the "terrible 2's". He's such a little cutie, i couldn't help but fall in love with that beautiful angelic face. I would like to wish you all the best and many happy years with Payton. I wish i lived in Florida (i live in Mass) so i could volunteer some of my time to you and Payton, I will continue to check in on your website to see how Payton is doing. Have a WONDERFUL trip to Disneyworld. God Bless you all, Doreen Lynch

Name:: Debbie
Email:
Date:: 03/02/03
Time:: 12:19 PM

Comments

Yesterday was a big day for Payton. We took him out to lunch with Grandma, Daddy, Mommy, Shannon, Deven, and Kendal! We had a great time and he had a nice long NAP!! He absolutely loves to be OUTSIDE and doing things, no matter what it is, so I have been inspired by the Nolan family to put more of an effort into his "outings." We (Rob and I) are so busy with work, Paytons care, non-profit stuff, I could go on and on.. We NEVER stop.. But, I have come to realize that Payton is no longer interested in watching movies all day ( he used to get angry if you even stepped in the WAY of his movies) but actually more interested in going OUT and seeing what is in the world, and that is more important than ANYTHING else that we are doing. I obviously cannot ask Rob not to work or even stop working myself but there are many days and weekends that can be given to a "Payton Outing!" This is not to say that we didn't go out with him before but I am feeling that Payton should go out at least once a day!!! His favorite places so far are Toys R Us and DISNEY, but we can work on that to add to the list!! ......At our last Physical Therapy visit, Susan had a WONDERFUL SURPRISE for Payton!! It was a huge SWING that holds up to about 400 pounds and his whole body lays on it and he can actually SWING!!!!!!!! I cannot explain how content he was and how much he liked it, he DID NOT want to leave!! We are talking about buying him one but they are about a thousand dollars so we will see about that (we may try to put something together that is less expensive) but at least when he goes to PT he can swing and have a little fun instead of dreading his sessions!! I went to Ryans grave last night by myself just before they shut the gates and left him a beanie baby. It feels good to be able to visit him there and I wish so bad he wasn't there but at least we can go and talk to him whenever we want. His cemetery is quite beautiful with VERY GREEN grass EVERYWHERE and beautiful headstones everywhere and with those huge trees that shade all of your loved ones that have passed... We miss you and love you Ryan...

Name:: MJ
Email:: TWEETYROLL88@aol.com
Date:: 03/02/03
Time:: 04:24 PM

Comments

Hey Payton, How you doing? Did you get your valentine from me? I included extra stickers for you. Hope you enjoyed them! Hugs to you and your mom! Love your buddy, MJ

Name:: Debbie
Email:
Date:: 03/03/03
Time:: 12:12 PM

Comments

HI Doreen!! HI MJ!!! Thank you so much for reading our journal and for keeping up with Payton!! MJ, we are wishing you to be well and feeling great again!!!! Thank you so much for the valentines cards and all the cards and letters that you send to Payton.. You are always SO thoughtful of him!!! We are now starting on the workings of our June benefit and starting to get things donated to the live/silent auctions.. If you have something you would like to donate, please email or call me.. We are also compiling our list of volunteers so if you would like to volunteer that night, please email or call me also!!! THANKS EVERYBODY and also thank you very much to all of you that have contacted me about Ryan Nolan and offered your thoughts and prayers to Regina and Jim.. They appreciate it so much as they are going through the toughest times of their lives...

Name:: Jennifer
Email:: jp954@hotmail.com
Date:: 03/03/03
Time:: 04:37 PM

Comments

Hey Debbie. It's Jennifer. Well you know Rodd and I are already on your volunteer list and my mom should be there too. What kind of things are you looking for for the auctions?Well let me know. And I am sure you are probably crazy with getting everything together for the benefit, but just reminding ya whenever you get the chance to send me that article via email bc i am dying to read it. I was at Outback twice last week- but you weren't there either time :( Let me know whenever you need my help for anything with the benefit. Talk to you soon.By the way I am so sorry about Ryan. I really hope you guys find a cure for this horrible disease.

Name:: tammy courter
Email:: tbone123tam@aol.com
Date:: 03/04/03
Time:: 10:09 PM

Comments

Hello Payton, Keeping mommy and daddy in line? I work with daddy everyday he talks about you all the time. How you are growing and learning new things everyday. He tells Mike and I all about your progress and how you make him smile. Keep up the good work big boy. I can't wait until June for the next benifit. I hope to see you soon. My son Ryan says hi.

Name:: Debbie
Email:
Date:: 03/05/03
Time:: 11:18 PM

Comments

Hey Jen, Hey Tammy!! Thanks for writing!! Jen, I will definitely send you a copy of that article. I will send you a real one in the mail so you have your own copy!! I will also call you soon because I want to go over a bunch of clothing questions/etc.. with you! Do you already have that plastic stand up thing?? I feel like you had one last year, but my memory is failing me.. I will talk to you soon.. Tammy, Ryan and Diane, we love you guys--give Ryan a big hug for us!! Payton is feeling a little under the weather the past two days.. Yesterday he spent most of the day on the bipap (and didn't even mind) which is very unlike him and today he seemed a little better but he is going to the pulmonologist tomorrow and we will see what is going on after that.. He is such a llittle trooper. I wish I was that strong. He is SO tough... I met with Regina and went over a ton of details about her new foundation. She will be starting a foundation in Ryans' name where she will be able to raise money for sma research and maybe make some big dreams come true for some sma children.. She has some really awesome ideas and BIG plans, so I will let her elaborate whenever she is ready but she is in the process of getting official so she can get started.. Her and Jim are dedicated to stopping sma from taking any more children from this earth. We all are working together to do that and our sma family is reaching out to the public for help.. We need to all pull together and stop this disease once and for all. Remember, TWO sma babies are born EVERY DAY.... Love to you all...

Name:: Debbie
Email:
Date:: 03/07/03
Time:: 12:08 AM

Comments

We spent most of our day at the doctors' in west palm beach.. Payton got antibiotics and he will be on them for the next 10 days.. He was not looking good at all for a while, but tonight around 10pm he actually had those pink cheeks and looked a little better, so keep your fingers crossed for him... He is sound asleep now... Lots of work going on lately with the benefit and Regina's benefit and EVERYTHING else you can imagine... If anyone would like me to mail them a donation letter or two to try and get things donated to the auction, just give me a buzz or email and I will send them out!! We love you guys!! Goodnight!

Name:: Jennifer
Email:: jp954@hotmail.com
Date:: 03/07/03
Time:: 01:10 PM

Comments

Hey Debbie. What plastic stand up thing are you talking about? Well whenever you are ready, give me a call and we will go over whatever you want. And also whenever you send out the invitations for the benefit include some extra ones or at least the donation parts bc i will hand them out at my work. Also, you can give me and my mom some pins, bc i will put them for sale here at my work and my mom will put them at her Outback. Well talk to you soon hun. Hope Payton feels better.

Name:: Sue Barry
Email:: szuzzy@aol.com
Date:: 03/07/03
Time:: 11:07 PM

Comments

Debbie, I read Paytonspal all the time. I am so proud of you. You're a wonderful person and an even more wonderful mother. Love u

Name:: Jen Berman
Email:: LuckyStarr0714@aol.com
Date:: 03/09/03
Time:: 08:31 PM

Comments

Hey Buddy, It was great seeing you today :) I had fun watching Lilo & Stitch with you. I will come and visit you again soon. Jen B

Name:: Debbie
Email:
Date:: 03/09/03
Time:: 10:00 PM

Comments

Hi Jennifer, Sue and Jen!! Payton is doing SOOO MUCH better than last week. We kept him home this weekend to get him as well rested as possible and he is looking so much better already.. Thank goodness for antibiotics and steroid!! Thanks for writing Sue! I haven't seen you in forever!You must come visit with Peetie at work!!!! I am usually there during the week--no more weekends unless it is in the morning--we are trying to spend time together as a FAMILY on the weekends!! Jennifer, I am so sorry I missed you at work, I will call you soon though! I think I am going to pick up that plastic thing for you--it is that thing that holds a sheet of paper and we can print what we have with prices on it. I could almost swear you had one last year???? Thanks for visiting Payton Jen B, he likes to have well-visitors!!!!! We bought Payton a new movie today--the veggie tales Jonahs' big idea movie--but he did not want any part of it. It is funny because we took him to see it at the movie theater and he loved it, but on dvd he wasn't interested. Maybe he is trying to tell us something! Uncle David and Jane were in town this week, so we had dinner with them and Uncle Ryan and Aunt Jamie and Cousin Reese on Saturday night at the Outback, of course!! We had a great time--it is always so nice to spend time with family. I love to hear all the stories about Grandpa Max and the "shop"--it so much makes me think history repeats itself!! Have a safe trip back to Mass, Uncle David and Jane and we will see you hopefully for Cousin Heathers' wedding!! If anyone is interested in going to our benefit in June and I do not already have your address, please let me know!!! If you have received an invitation in the past, you will receive one this year, but if you have changed your address in the last year, please email me with your new address!! We will be sending out invitations about 6 weeks before the event... We are looking for donated items, so if I haven't already given you a donation letter, please let me know and I will get them to you!!!! I just found out that Payton will be getting the most fabulous SWING that I had previous told you about, thanks to G-MA ROZ!!!! She is helping us pay for the real version so that Robert doesn't tear up the house and rig up something from tool time!!! THIS is a HUGE PRESENT for Payton and we are so THRILLED that he will have this swing!! To see him on it, is amazing!! It felt like the first time that he was actually doing something that ALL kids can do!! AND SHOULD DO!!! I will let you know when he gets it and I will put pics up of him on it!!!! Love to you all!! Deb

Name:: MJ
Email:: TWEETYROLL88@AOL.COM
Date:: 03/10/03
Time:: 03:21 PM

Comments

HI PAYTON, MY BUDDY! Hope you are doing well and having a great day! My dog, Wyatt, sends you big slobbery doggie kisses. Love your buddy, MJ - http://caringbridge.org/ny/mjpurk/

Name:: michelle
Email:: aworrell@columbus.rr.com
Date:: 03/11/03
Time:: 12:06 AM

Comments

Hey Debbie and all you Payton Pals --------the Miracle for MAdison's Angels at the End Zone fundraiser this past weekend has a running total of just over $123,000 ( we still have to pay the room bill). It was an awesome event -- if you guys can try to get the Miami Hurricanes football team to come to you event ----- our Natinal Champion Buckeyes lead by the coach adn Quarterback and not to mention that OSU has the top researcher in the country -- has helped us in our cause. Since some of your money will be going to U of Miami for research and studies on SMA -- this is a good tie in. It is familie like us that rock this world of SMA.

Name:: Jennifer
Email:: jp954@hotmail.com
Date:: 03/11/03
Time:: 01:22 PM

Comments

Hey Debbie. I got the articles and the cute pix of Payton and the donation letters. I still do not have any idea what plastic thing you were talking about but thats okay. I was wondering what you needed still for the donations. Do you need gift certificates, or actual stuff? I can probably go around to some places I know and show them the donation letter and see if they want to donate gift certifcates or something. If businneses donate stuff do they get their name in the brochure at the banquet? I just want to make sure so I know what to tell them. Because right next door, I got Celebrity Cheesecake and I am sure they will donate a gift certificate or a free cheesecake or something. I will also go to some other restaurants and businesses if you need some help with that. Just let me know. Talk to you later, say hello to Payton for me.

Name:: Debbie
Email:
Date:: 03/11/03
Time:: 11:40 PM

Comments

Hello out there!! HI MJ!!!!!!!!!!!!!!!! We are hoping you are feeling like a million bucks by now!! Please give Wyatt a big kiss for us and BIG HUGS TO YOU!!!! Michelle, WOW!!!!!!!!!!!!!!!!!!!!!!!!! ONE HUNDRED TWENTY THREE THOUSAND DOLLARS!!!????? NOW, THAT WILL MAKE A DIFFERENCE IN THE WORLD OF SMA!!!! That is really so amazing!! I agree about the school and the team, coach, etc.. and I will definitely work on that!! It may take me a couple years to get things really rolling on that front, but I know it can/will happen!!!!! I would also like to invite Oprah, Julia Roberts, Brad and Jen Pitt, Rosie and VIN DIESEL to our benefit!! I know that you all are big fans of Paytons and you know that you are welcome to join us in his honor to help STOP SMA FROM TAKING THESE KIDS LIFE AWAY!!!!!!!!!!!!!! We are soooooooooo close. And yes, Michelle, I agree, it is our families and our friends, people who have seen first hand how RIDICULOUS this spinal muscular atrophy is, that really ROCK THE BOAT when it comes to taking action against this disease!! THANK GOODNESS FOR ALL OF YOU!!!!!!!! We mean it, I would not be able to have HOPE for my child if it wasn't for this HUGE support group who BELIEVE in a TREATMENT and BELIEVE that Payton will survive and maybe even be able to hold his HEAD UP ONE DAY!!!!:) Love you guys.... JENN, let me know if you have any questions, or need more letters or pics, etc.. ANY GIFT CERTIFICATE or merchandise or service or ANYTHING is good!! For instance, there were new tools donated last year by Home Depot, tons of restaurant GC's, Shannon got TWO puppies donated (animals are GOOD!!) JEWELRY IS BIG!! Carole has already gotten one thing donated by her jeweler, but we can use ALL the jewelry we can get, it is hard to get donated!! TRIPS are great, Leah had donated the trip to Vegas and Dionne got Norwiegan to donate a SEVEN DAY CRUISE last year!! SPORTS MEMORIBILIA IS HUGE!! We will take as much sports memoribilia as you all can get!!! We had the beanie baby basket, the antique doll, the antique watch, the mattress/bedspring/and frame, the Guy Harvey tee-shirt collection, the absolutely GORGEOUS furniture from Adi's father, Jesse... (FURNITURE IS BIG) If anyone can Rooms to Go, that would be FABULOUS!! GOLFING PASSES ARE GREAT!!!! Can anyone get Heron Bay?? THey blew me off last year!! Let's see, what else?? HAIRCUTS ARE BIG, ask your salon or your hairdresser!! They usually will gain a client so it is a win/win for everyone!! PS, this info is for EVERYBODY! not just Jen P!!! We also had a tattoo GC, pest control (KENS KILLERS), Pool cleaning by Ike Carters Pools, LOTS OF STUFF donated by Paramount Pics and other movie affiliated people thanks to DIONNE!!! She got everything from signed posters to FREE MOVIE TICKETS FOR A WHOLE YEAR FOR TWO!! Outback donated a catered dinner, Goodyear donated a blimp ride the first year and Miami sky dive donated an EXTREME FREE FALL last year!! There were almost 150 items all together and it was amazing!! Whatever you can think of is great, and let me know if you need ANYTHING!!! LOVE LOVE LOVE Deb:)

Name:: Debbie
Email:
Date:: 03/11/03
Time:: 11:44 PM

Comments

PS, ya know Jen, you brought up something very important and we really need to acknowledge EVERYONE that helps us, so YES, please tell whomever donates anything to you, that they WILL have their name published in our auction booklet.. I will have a special thanks page that lists all of the many contributors and people that have donated of their time, money and heart, to help make this event happen!!:) Everyone just please make sure I know the names of everyone that has helped you so that I can print it in the booklet (with the right spelling!!!):) GOODNIGHT TO ALL!!

Name:: Jennifer
Email:: jp954@hotmail.com
Date:: 03/12/03
Time:: 09:36 AM

Comments

HEY DEBBIE. IT'S JENNIFER AGAIN. I STARTED WORKING TODAY :) I WENT NEXT DOOR TO THE CHEESECAKE PLACE AND SHOWED THEM THE PAPERWORK. I AM SURE THEY WILL DONATE SOMETHING. I WILL GO BACK IN THERE LATER TODAY AND SEE WHAT THEY SAY. I ALSO SENT AN EMAIL TO ALL OF THE OFFICES HERE AT WORK ASKING THEM TO DONATE SOMETHING FOR THE AUCTIONS OR AT LEAST TO SEND A DONATION TO PAYTONS PALS OR COME TO THE EVENT. HOPEFULLY THAT WILL BRING A NICE RESPONSE BECAUSE I HAVE 15 STORES WITH AT LEAST A FEW PEOPLE IN EACH STORE, NOT TO MENTION MY CORPORATE OFFICE. I ALSO FAXED A COPY OF THE STUFF TO MY MOM AND SHE IS GOING TO TRY AND GET EVERYONE IN HER OFFICE AND SHE SAID SHE IS GOING TO POST A PIC OF PAYTON AND THE LETTER AT HER OUTBACK SO PEOPLE CAN POSSIBLE DONATE FROM THERE TOO. ALSO THE GIRL I WORK WITH, HER NAME IS DIANA(PRONOUNCED DEE-AUNA), WOULD LIKE TO KNOW IF YOU NEED VOLUNTEERS FOR ANYTHING ELSE. SHE WOULD LIKE TO HELP IN ANY WAY POSSIBLE. I KNOW ME AND MY MOM AND MOST LIKELY RODD WILL BE DOING THE TSHIRTS BUT DO YOU NEED ANY VOLUNTEERS FOR ANYTHING ELSE? LET ME KNOW HUN.

Name:: Jennifer
Email:: jp954@hotmail.com
Date:: 03/12/03
Time:: 03:43 PM

Comments

Hey Debbie, it's Jennifer again. Sorry to be such a pain, but if you can give me a call, because I had some questions for you. Thanks.

Name:: Debbie
Email:
Date:: 03/13/03
Time:: 01:35 AM

Comments

Jennifer, I emailed you and I will give you a buzz tomorrow!! Today was one of the absolute BEST days of my life. Today, for the first time EVER, Payton COMMUNICATED TO ME!!!!!!!!!!!! I mean REAL communication, not just crying because the movie that he wants to watch isn't on!! We have this machine that is sort of like a grid--4 across two rows--which makes 8 boxes in which you can put pics of things or shapes or numbers or letters or colors!! We did colors!! Each box has a red light in its' corner that scans across each box and the machine is connected to a switch that with the SLIGHTEST amount of pressure (Payton is very good at moving his fingers) can be "clicked!" These boxes of 8 can all be manipulated to "say things" on different settings, so for instance, if we are on setting #1 it is on colors--when the red light scans each color, it will "say" that color IF PAYTON CLICKS THE BUTTON! SO, I tell Payton my favorite color is purple--the red light scans around and I tell him each color for each box... THEN, I tell Payton I want him to click on my favorite color Purple... The light starts scanning... red... orange... blue... yellow.... AND CLICK.... "PURPLE!" He totally clicked on the RIGHT ONE!!! I totally cried, this was the FIRST TIME EVER That I knew what was going on in that brain of his FOR SURE and I will never look at him the same again.. It is so weird, but it is like Payton is a real, whole person all of a sudden, not that I didn't think he was before, but this just opened up a WHOLE NEW WORLD for us and I cannot explain to you the JOY, THE EXCITEMENT, the AMAZEMENT, it is BEYOND THRILLING for us as parents to think that Payton is finally going to be able to have a conversation with us.. This is only the beginning and we are SO EXCITED to really go all the way with this. Payton is so smart and he REALLY got to show us this for the first time tonight (Can you tell I am excited?????????:))!!!! Well, I will keep you all updated, but this is a MUST HAVE for ALL SMA children!! Payton could have used this thing MONTHS AGO!!! It is just such a shame that with all the therapists, all the nurses, the docs, and just so many medical professionals, NO ONE has even SUGGESTED we get our hands on one of these... ONCE AGAIN, it was another sma parent that gave us the heads up... THANK GOODNESS FOR ALL YOU SMA PARENTS!!! We would SO be living in the dark... But, believe me I am not complaining, I am just thrilled that this has happened!! We are MISSING RYAN NOLAN TONIGHT and I want to thank you Ryan, because I know you had a HUGE hand in what happened today!! Robert told me late tonight what he asked you for when he visited you at the cemetery last week and I KNOW you made this happen!! You are such a special and awesome and COOL kid. You really are and you are forever a part of our lives little man.... We love you and your mommy and daddy too. Goodnight everyone.

Name:: MJ
Email:: TWEETYROLL88@aol.com
Date:: 03/13/03
Time:: 09:06 AM

Comments

WOO HOO!!! Way to go Payton!!! Now there is no stopping you!!!! Before long, you will have your board talking away, giving commands, and making everyone do what you want. I'm glad you got it. I also heard that your grandma is buying that swing for you. How cool is that!!!!!! Bet you can't wait!!!! Well, Wyatt sends big hugs and kisses and so do I. Take care. Love you bunches and bunches. Your buddy, MJ www.caringbridge.org/ny/mjpurk

Name:: Betsey Carlisle
Email:: betseycarlisle@yahoo.com
Date:: 03/13/03
Time:: 07:48 PM

Comments

I'm so sorry and heartbroken to hear of another lost baby. Debbie, you've done so well helping cure this disease. Look at what you've done! I don't know what to say...I'm crying but I'm proud of your accomplishments. Sweet Payton. I know that feeling of excitement in communicating the first time. I was so excited like that when Conner first played with his cousin Drew by putting his arm in a sling and sliding a car into the little battery operated thing that slung the car around the track. Conner actually got to show off HIS toy to his cousin, Drew, and they actually got to play together. That was something I had anticipated when my sister-in-law and I were pregnant together but gave up on when we found out Conner was sick. We could never figure out with Conner if he truly was listening to us when we used his switch because he would do his own thing and just look at us and laugh. We think he knew what we were saying, for sure, but he was going to do his own thing and keep us guessing. His cousin does that, too. Anyway, I'm keeping up with you!

Name:: Debbie
Email:
Date:: 03/13/03
Time:: 11:14 PM

Comments

Hey MJ!! We just got your card!! THANK YOU!! It is beautiful!! Are you feeling any better lately??? Hi Betsey!! It is good to hear from you! I so know what you are talking about with the plans etc.. Every time I think back to when I was pregnant and ALL my friends had JUST had babies, I remember all the plans we made and all the anticipation of watching Payton do SO MANY things "for the first time" and since the diagnosis, it is nothing of the sort.. You are just denied of so many things that you looked forward to and then that doesn't even compare to the pain of watching your son not be able to play with the other boys and girls or eat with them or walk with them, etc...etc... etc... Very painful stuff.. But, the little things definitely do help and that is what happened with the new machine, and the arm sling and THE SWING that he uses at Pt and that we are going to get for the house soon!!! I guess you just do the best you can and hope not to completely lose your mind in the process.. I hope to see you/talk soon Betsey, hope you are doing well and still hopefully on your honey moon!:) I am very close with Regina and I tried (not so hard to do) to put myself in her shoes, with all that she has been through, Ryan in the hospital, Ryan in a coma, Ryan losing his fight against sma and just losing Ryan.. And it just seems to me, that even with time, that nothing will ever be good enough, without your baby in your life.. I mean, it seems like things might get more bearable or you may be able to smile eventually or function without completely falling apart or wanting to die yourself, but really, you must ALWAYS just want your baby back.. I mean, how could that ever fade?? I want to bring Ryan back into Reginas' life so bad, the way he was, so happy and so healthy (for having sma Ryan was extremely healthy physically!) and it is just not possible. Death is so FINAL. They are here and then they are GONE... It is just so wrong, all of it. I think that if Payton was gone, I would never find true peace again until we were together again... That may sound pretty serious but think about it. If you lost your child forever, how would you handle it?? Just because they have sma, doesn't make us better prepared to lose our children. It really doesn't. Kids are not supposed to buried. Kids are supposed to have fun and play and get in trouble and look forward to Disney World... Even if they are handicapped.. Being handicapped isn't so bad, it is the dying child part I have trouble with...

Name:: MJ
Email:: TWEETYROLL88@aol.com
Date:: 03/15/03
Time:: 12:40 PM

Comments

Hey my best buddy Payton, How was your day? Hope you it was great! Keep smiling and know Wyatt and I love you! Huggles and Kissems, MJ - http://www.our-sma-angels.com/Margaret/

Name:: Debbie
Email:
Date:: 03/15/03
Time:: 08:44 PM

Comments

Well, my mom is Las Vegas this weekend watching her sister (my aunt) Joni get married!! She is having a great time and she DESERVES that so much and also the much needed break from all she does to help us, her work, etc.. so I am THRILLED she is there and having a blast!! Congratulations JONI!! Wish we could be there to celebrate with you!! MISS YOU!!! Payton is good--he had PT yesterday and I can't tell you the difference now that the swing is there. He used to de-sat upon entering that parking lot and now he is just thrilled! Don't get me wrong, he still gets VERY UPSET for the leg stretching but he is VERY HAPPY when the swinging starts!!! I have a couple pics of Payton on the swing that will be up soon!! We are planning a BIG celebration of Ryan Nolans' life... It is really Regina's event but we do everything together so we are helping her get started!! She is having a day of fun and celebration of Ryans' life at CB Smith Park on May 3rd! We will not be sending out invitations, but she will be, so if you are interested in attending and you are available on May 3rd, please let me know and I will ask her to send you an invite! It will be from 12pm to 6pm and there will be lots of food (from the OUtback!) and drinks, and games for adults and kids, lots of activities and music and I think even a DJ.. Regina is working on a ton of stuff to get this event together, so if you would like to help out or have any ideas, please let me know!! The event is $20 per person and we will be selling raffle tickets to win a big screen TV (I am pretty sure it will be a TV, but it may be some other sort of equipment like that)!! So, if you want some raffle tickets let me know!! Regina is starting a fund called "Ryans Hope" and she is going to work on an "SMA House" where people can go to get information about equipment, nursing, sma care, etc.. Things that you just can't get out there without talking to about a million parents and even then you just have to figure it all out for yourself.. This is such a great idea and a HUGE PROJECT so we wish Regina a TON OF LUCK and look forward to helping her make this dream come true!!!!!!!!!!!!!!!! I have also been working hard on donation letters and pretty much trying to get EVERYONE to donate to our live/silent auctions!! I have plenty of letters that I have been printing so let me know if you need any! I am also getting tickets printed out this year and we are working on all sorts of goodies and surprises for this years event!!! I also need volunteers for the night of the event, so let me know if you can!!! We are having a car wash on March 29th which is a Saturday from 9am to 1pm so if you can come out and get your car washed, great, and if you want to help us wash cars, even better!!!! We will have lots of fun and if anyone needs directions give me an email or a buzz!! Mobil on Atlantic and Coral Ridge!!! Thanks for getting me the paper work Jen B, and good luck with everything else you are going through...I think that is it for now, love to you all... TALK SOON.

Name:: Debbie
Email:
Date:: 03/17/03
Time:: 10:43 AM

Comments

HELLO ALL!! OK, upcoming Outback, Paytons Pals, University of Miami benefit----JUNE 7TH, 2003 from 6pm--11pm... PLEASE MARK YOUR CALENDARS!!!! This year will be our THIRD ANNUAL BENEFIT!!!!!!!!!!!!!! Please help us to make this years benefit bigger than last year!! We raised about $50,000 last year thanks to all of you that gave so generously to help our cause!!!! It is with your help that we will BEAT SMA!!!!!!!!!! Don't forget!! SWIMMING HALL OF FAME IN FORT LAUDERDALE!! Semi-formal--Outback appetizers, caesar salad, filet or chicken, bread, cheesecake and MORE!! Silent/live auctions with TONS of items to bid on!! (& some GREAT deals too!) and music, a real live auctioneer (HUGE THANKS TO MATTHEW GREEN WHO HAS HELPED SINCE DAY 1!) and Payton in the flesh!! We are also planning a couple of SURPRISES for the night of the event!!!! SO, please let me know if you need any info!! Grandma is coming home from her much needed vaca/break in Las Vegas this weekend, and BOY ARE WE GOING TO BE GLAD TO SEE HER!!!!!!!!!!!! I think Payton was staring at the door yesterday waiting for her to come in!! I felt so bad, I called my mom in Vegas and had her speak tohim on the telephone!! He LOVES grandma!! Have a great day everybody!!

Name:: Debbie
Email:
Date:: 03/18/03
Time:: 02:16 AM

Comments

HI ALL.. Well, I am trying to wind down after my key shift at the Outback and ONCE AGAIN, my very RUDE neighbor is blasting his television so loud that I can hear it through my walls.. As some of you know, this has been an ongoing thing with us and this rude neighbor for a while, and for a while, he did keep it turned down after say 11pm or 12am the latest, (esp. after I finally had to call the police) but it seems that lately he is back to his old habits.. Apparently, he likes to go out and "have a few" and on those nights, he turns the TV up PARTICULARLY loud.. Now, I realize that he may be a little hard of hearing, and that while intoxicated, his hearing is probably that much worse.. BUT, WHY DO WE HAVE TO LIVE WITH THIS INCONVENIENCE??? I really do not understand how anyone could be so RUDE!!! THis man KNOWS that we have a very handicapped little boy living here, and it is almost TWO O'CLOCK IN THE MORNING AND I CAN HEAR HIS TV THROUGH THE WALLS!!!?? Is this right? Is this fair?? Of course not you say, and this should stop right away, you think.. WELL, easier SAID than DONE, believe me.. Even though I have gotten up and OUT of bed, gotten DRESSED, put on my SHOES, walked NEXT DOOR, asked him politely to TURN DOWN THE TV, again and again and again, this saga continues.. He claimed to have INSULATED his entire downstairs walls with some sort of 2 inch thick carpet or something, but at 2am when I can't sleep because of the vibration and noise coming through the wall, does he really think that I care how much money the 2 inch carpet cost?? OF COURSE NOT.. BUT, he still tried to tell me that I WAS CRAZY!! And that was the last straw, and that was when I finally called the police (this was probably my 6th or 7th trip downstairs, out of bed, yada yada yada..) ANYWAY, the noise did stop temporarily after that call to the police. NOW, I know that some of you out there are wondering why Robert, my very scary husband, never got involved in this mess.. WELL, to be quite honest, Robert has been SUCCESSFULLY going through "anger management" therapy for about a year now, and he felt that if he had to deal with this situation, it might ruin his almost YEAR run with successfully handling ALL ANGER.. AND, as much I HATE DEALING WITH THIS, I understood. I would rather just deal with the police than have our family get into a confrontation.. SOOOOOOOOOOOOOOOOO, after weeks of peace, he is back to it.. Tonight is probably the 4th night of RUDE RUDE RUDE.. I really can't get over how rude this guy is, not to ME, but to my son.. He doesn't know the WHOLE deal, but how can you KNOW that there is a little boy that is obviously VERY fragile living right NEXT DOOR and act as if you COULDN'T CARE LESS!!!!!!!! Well, it has finally been turned down. I finally broke down and called the police tonight. And, apparently they have taken care of the problem. I should go to bed now. Too bad our fight with terrorism couldn't be fixed with a phone call, huh?? Goodnight everyone. And may there be an angel to watch over each and every one of our troops in Iraq. This has got to be frightening for them and their families.. I guess it is for all of us.. Keep America and our troops in your prayers. We love you and miss you Michael Murphy:) We are anxious for you to come HOME! Love to ALL!!

Name:: Debbie
Email:
Date:: 03/18/03
Time:: 11:04 PM

Comments

WOW... WHAT A DAY FOR MOM! My mom called me this morning, and I expected her to tell me she was on her way over to see me and PAYTON!! Well, in a horribly HOARSE voice, she tells me that she is in Albequerque(sp?) New Mexico!!?? Well, of course, I am like "WHAT HAPPENED?" and WHY? She and my grandmother had gotten on their flight from Vegas to St. Louis (apparently some things got messed up with the airline and their original DIRECT flight home was changed to a flight to St. Louis and then home) and my grandmother started to feel sick shortly after take off.. Then, she felt that her nitro pills weren't working and she felt intense chest pain.. Well, after a few minutes they alerted the stewardess of the problem and my grandmother was put on a heart monitor in the AIR on the PLANE and they felt that her heart was fine BUT, under the circumstances the pilot had to LAND the plane and have my grandmother looked at, at a hospital near the airport in NM.. I believe that they requested not to do this, and felt that everything would be ok, but the pilot and the airline could not take the risk.. WHOA... I seriously cannot even imagine, I figure it must have been very scary-weird and just sort of surreal.. They had an ambulance waiting for my grandmother at the airport and my mom and her were taken quickly to see a doctor. He said that she had some blockage in an artery, but apparently this was something she had for quite some time and they felt that she must have had pains due to the stress of the fact that they would be unable to take a direct flight home and had to stop in St. Louis.. I am not sure if this was anxiety or just plain stress of the quick change of flight plans, but, the doc said he could do a procedure to fix her artery in 30 minutes.. SO, he did it, and now my grandmother is resting comfortably under observation at the Lovelace Hospital in New Mexico.. Thank goodness she is ok!! My mother has not slept in two days and has missed work, her family and has been making sure everything gets taken care of on her trip with my grandma, so I bet she is pretty beat up by now.. My poor mom, she is going to need a vacation from her desperately needed VACATION!! Well, they should get clearance to leave the hospital within the next 24 hours and then my mom can figure when/what flight they can take to get HOME!! I just hope everything goes smoothly from here on out, so that they can get home safe and sound!!! Payton is missing his grandmother VERY MUCH!!!!!!!!!!!!!!! We have been working on his new "clicker" machine and Payton LOVES clicking!! He is exploring on that machine and is figuring out what the difference in the boxes, lights and phrases are and what they mean, but he is enjoying it and we are absolutely thrilled! He knows all his colors and is working on yes/no/stop/mom come here and numbers too!!!!! Anybody watching American Idol?? I must say, Rob and I went from being movie buffs to reality tv buffs!! I absolutely love american idol and I am betting on Trynice (sp?) or Ruben or Clay or Corey! Those are my favorites!! I will keep you updated on my mom and grandma, please keep them in your thoughts and prayers.. PS.. NO NOISE TONIGHT! YEAH!!

Name:: Jennifer
Email:: jp954@hotmail.com
Date:: 03/19/03
Time:: 04:06 PM

Comments

Hey Debbie. I was just wondering is Murphy over in the Middle East? I will pray for him regardless because is out their supporting our nation :) I will talk to you soon and see ya next Tuesday if all goes well.

Name:: Debbie
Email:
Date:: 03/20/03
Time:: 04:28 PM

Comments

Yes, Jennifer, Michael is over in Iraq protecting our nation and so many others from terrorism! Please keep him and his family in your prayers! I should be hearing from Jackie soon with his new address and I will post it in case anyone would like to write to him.. Also, Jenn Haws' brother, Chris is over there fighting for us. For those of you that do not know, he is a fighter pilot in the navy.. I read an email from him and he says that Iraq is much prettier than Saudi Arabia was! He sounded in a good frame of mind for what he is doing and the amount of pressure and stress that he must be under.. We are praying for him and the thousands of troops that are out there fighting for freedom from terrorism in the world!!!....... Well, My MOTHER is finally in Fort Lauderdale. She is not home yet, but she is en route to her home where she will no doubt take a shower and then pass out for a few days.. It turned out that after my grandmother was released, they were unable to get a flight out until this morning and they arrived in south Fla. about 3pm today!! THANK GOODNESS they are home and home safe!! I know Payton will just be thrilled to see his grandma, and I will too! I am working on a project to get highschools involved in fundraising... If anyone is interested in helping or has any ideas along those lines please let me know!!! THANKS EVERYBODY FOR ALL YOUR HELP!! We have alot going on right now with fundraising and it gets it little crazy, but in the end it will all be worth it to see a CURE FOR SMA!!!!!!!!!!!!!!!!!!LOve to you ALL!!!

Name:: Jennifer Haws
Email:: jenpaws@yahoo.com
Date:: 03/21/03
Time:: 12:34 PM

Comments

Hi all- Hope Payton is doing well and using his new machine to communicate! He is so smart, can't wait to see him use it! Deb, I know my Mom would help w/the high school involvement. Her students already know all about Payton when she helped me raise $ for the crop-a-thon. Hope all is good, especially with your Grandmother and Mom going through quite an ordeal this past week. Email me if you need anything. Love to all, Jennifer

Name:: Debbie
Email:
Date:: 03/24/03
Time:: 12:52 AM

Comments

Hi Jennifer! How long before your moms school is out for the summer? And does she teach seniors?? I am thinking I should get in touch with her about what I am up to very soon!! I will email you later!! Payton is doing so great with his "clicker!" He really is! Rob and i worked with him tonight on it and he was proving over and over that he really knows his colors and it seems that his favorites are orange and purple, and I think he likes purple because MOMMY likes purple! Not sure about that, but you never know!! He has been having some stomach issues lately and I think that he needs his mickey changed out and hopefully that will solve some of the problem. He has ALWAYS had digestion, constipation and just stomach issues period, but sometimes they are worse than others... He is sleeping very soundly and peacefully right now though and that is good! Reginas' event is being rescheduled again, so I will write as soon as I find out exactly when and where it will be! Our car wash is THIS Saturday!! And our crop party "scrap in a snap" will be next Thursday!! We are starting our Marjory Stoneman Douglas High "MSD vs. SMA" fundraiser tomorrow and all the kids will donate (& receive a little Paytons Pals pin) and the class that donates the most money will receive a pizza party!! They have done this for breast cancer and a couple other organizations, but the kids are very excited to help Payton and his "pals!!" I will let you know how that goes!! I think that is it until the benefit in June, we are about to get started working on the invitations, etc.. We still need LOTS OF GOODS for the auctions, so please keep your thinking caps on and when you are out and about keep those donation letters on you!! If you happen to not have any and want to have me get one to someone, just give me a buzz..954-935-6025!! THANKS EVERY BODY!!! It is SO GREAT to have so much help from you all, I really do appreciate it!! As always, Regina and Jim, Ryan and the troops over in the middle east are in our thoughts, prayers, and our hearts... I would also like to send out a personal message to Leah, THANK YOU SO MUCH LEAH FOR ALL YOU DID TO HELP FIGHT SMA AND TO HELP PAYTON!!! I sent your mom a letter the other day, and expressed to her how much we all miss you and hope that she is doing ok and that Teah and George are ok too.. We LOVE YOU & MISS YOU LEAH LORRAINE!!!!! ~09/08/70--10/08/02~

Name:: Debbie
Email:
Date:: 03/24/03
Time:: 09:54 PM

Comments

Just got home from work--busy for a MONDAY!!:) Payton is good... He is just about ready for bed, so I must go, but I just want to remind everyone--car wash on Saturday!!! 9am-1pm Talk soon.. Goodnight!!!

Name:: MJ
Email:: TWEETYROLL88@AOL.COM
Date:: 03/25/03
Time:: 03:39 PM

Comments

Payton! Good job with your colors and clicker! HAPPY SPRING!!! How is your weather? It's been so nice here and Wyatt gets to go for a walk almost everyday. Hope you can go outside soon and enjoy the warm weather! Have an awesome day! Love, MJ - www.caringbridge.org/ny/mjpurk

Name:: shaina
Email:: shaina@ourshootingstar.com
Date:: 03/25/03
Time:: 10:28 PM

Comments

hi payton, it was so nice to see you today. you are so handsome and i was so happy to get a goodbye wave. i hope you can come visit us soon, and i will definitely come visit you again! i know your "pal" jacob is looking out for you everyday. love, shaina p.s. tell your mommy that it was good to see her too!

Name:: Debbie
Email:
Date:: 03/27/03
Time:: 10:55 AM

Comments

Hello out there!!! We (Payton & I) want to thank Shaina for coming to visit the other day! And for bringing those handmade puppet faces!! They were very very good Shaina!! It would have taken me about 2 weeks to make them (& probably not that good!!) Payton loves them and he is still working on his "scanning" machine!! He esp. likes to do colors but he is still learning how to manipulate the "clicker" with his fingers and understanding how the machine scans, etc..! His fingers seem to tire pretty quickly and then he gets frustrated, but we just stop when that happens and start again later or another day!! He really enjoys it til then though!! Payton is having stomach issues again.. It seems lately that he has stomach issues off and on all the time.. I am taking him back to the GI soon, and hoping that he can help us figure this mystery out... I can't stand it when Paytons' little tummy hurts.. He is such a trooper.. We are having a car wash this weekend, as most of you know!! Thanks in advance to those of you that come out and volunteer and to those of you that come out and get your car washed!! We are getting better and better at car washing so you might be pretty impressed with the job that we do!!!:):) SUPER BUSY lately with SO MUCH going on with fundraising, etc.. but we are hoping to FIND A CURE, so that means we work til we drop!!! Thanks to all of you that are working hard getting things donated!!! This makes up HALF of what we raise at the benefit(all the live/silent auction items!!) So, these items are very important and we need as much as we can fit on those tables!!! Maria has come up with a couple new twists on how to run the tables so that they are more organized and less chaotic at the end of the night..Actually, they should be Chaotic-free!!! All of the silent auction items will be paid for before the end of the night this year, so that both auctions are not being paid for at the same time, plus this will alleviate people from wondering if they have won, etc.. their names will be announced shortly after the silent auction ends and they will be able to take care of their purchases long before the live auction even begins!!! Great ideas Maria!! THANK YOU SO MUCH JENN P for going and helping me to pick out all of those shirts, sweats, tanks, etc.. for the benefit!! They are being ordered as I write this and they will be ready in plenty of time for the benefit this year!! One of my goals this year is to have everything ready to go and NO LAST MINUTE CRAZINESS!!??? Ha Ha Ha Iknow Iknow, there is no such thing right??? Well, please keep MJ in your prayers, she is in the PICU at UMDNJ for a short bit and we want her to get home safe and SOON!!!!! Also, I have Michael Murphys address if anyone would like to write to him or send him cookies or something in Iraq!!!! It is: (First Line) LCPL Murphy Michael R. (second line) 2nd Tank BN. Tow PLT. (third line) 5th Section DETA. (fourth line) Unit 73203 (fifth line) FPO AE 09509 3203 Well, that is it, so please send him a note filled with LOVE!!! Jenn Haws, if you have your brothers address, could you please post it here?? I know that there are many that would love tosend him a note and THANK him for fighting for our country and against terrorism!!! If anyone needs donation letters, please email me and I will get them out right away and if you think of anything, let me know!! THANKS EVERYBODY!! HAVE A GREAT DAY!!!!:)

Name:: debbie
Email:
Date:: 03/30/03
Time:: 05:33 PM

Comments

Well, Alot going on.. Let's see.. Michael Murphy was in a hum-vee accident while over in Iraq--it seems that he is ok, in a hospital suffering from a jaw injury and leg injury, but they expect him to well and back in the action fairly soon.. NOT good news, but not bad news either.. The address that I listed previously is still Michaels' address so if you would like to write (they want letters!) to him he would be thrilled! They also would like: food, flea collars (for ankles to avoid sand flea bites, deodorant, mouthwash, toothpaste, gum, candy, mags, crosswords??, "non-tub" shower wipes (these are expensive but there is no running water over there) and anything else you can think of that they might need... PLEASE say a prayer for Michael during his time over in Iraq! We need him, Chris Haws, and MANY OTHERS to come home safely!!!!!! We had our 4th car wash ever on Saturday~~ It was a huge success!! We raised $597 in just over 3 hours!! We seemed to have our most fun and easiest car wash yet!! I would like to THANK EVERYONE That came out to help us in the VERY HOT SUN to help, stand on the corner, get their car washed!,wash cars and have FUN too!! Lori M, Hayden, Brody, Jen B, Kelly, Max, Matt, John Nelson, Jen A, Jenn Haws, Talia, Kim, Joe Romo, Andee Powell, Danielle, Beth, Stuart, Rani, Lauren, Jason, Kelly N, Eddie, Austin, Mary, Taylor, Keri-ann, Ariel, my grandma, mom, Diane, Richard, Robert, Gabe, and all of the MANY strangers that donated to OUR CAUSE!!! Saturday night we took Payton out to dinner with grandma, grandpa, daddy, Jenn and Gabe to Bruces' restaurant, Gold Coast Grill, in Coral Springs.. We had a fabulous time!! The food their is delicious, Bruce is wonderful (he made sure a table was ready that could accomodate Paytons' chair well ahead of time!) and we had a nice relaxing dinner! It was kind of dark in there and Payton couldn't see too much, so I think he got a little agitated during dinner but next time we go back I saw a better place that we could sit and he could see plenty of action without being in the way of traffic!! This morning I had a meeting with some of our PALS and talked about auction items, etc..!! If you have ANY ideas about things that could/should be donated, please let me know soon!! It is getting close to crunch time as far as getting letters out for donated items, so we will be busy for the next two weeks with those letters!! This afternoon we took Payton to see the JUNGLE BOOK 2 at the movie theater.. He was ok for almost the whole movie and then in the last 10 minutes, he started to cry and sort of moan like it was just too slow (sad part!) for him!!! Then, we went to KMART where he is TOTALLY happy looking at toys, movies, etc...!! We got him a new movie called "butt-ugly Martians??!!" I am not sure about this, but we will try anything!!! I will let you know if it works out!! Well, it has been a very busy weekend, and we are looking at quite a few busy days til the benefit!! We are still looking for volunteers, so if you know anyone let me know!! The ticket price will be the same as last year ($75 per person) The venue is the Fort Lauderdale Swimming Hall of Fame--the food is Outback (blooms, filet, chicken, caesar, bread, cheesecake) the bar is OPEN!! With lots to choose from!!! I am pretty sure music will be by 97.3, auctioneering by MATTHEW GREEN, auction items galore, a good quick video, a hello from our favorite geneticist Dr. Lisa Baumbach, Bill Leahy and probably ME:), and then LIVE AUCTION, dancing and lots of cool tee-shirts, tanks, sweats, and baby clothes!! See you all there!!!!!!!!!!!!!!!!!! If anyone is coming to the scrap book party next week, and needs directions to Leeannas', please call/email me and I will get them to you!!! LOVE TO YOU ALL!!!Deb

Name:: Jennifer Haws
Email:: jenpaws@yahoo.com
Date:: 03/31/03
Time:: 04:17 PM

Comments

Hi all- Please email me at jenpaws@yahoo.com if you have collected any items for the auction, sent out donation letters, visited businesses, have connections with any business. I have a list that I will keep updating. This is to prevent us from going to the same places and to make sure we thank everyone who donates. Thank-you!

Name:: Debbie
Email:
Date:: 04/01/03
Time:: 06:05 PM

Comments

HEYLO OUT THERE!!! I am thrilled to announce that I got my braces OFF today!! How exciting is that??? I am so happy to have those things off! It is literally like having marbles in your mouth--24 hours a day!! We are looking forward to our Scrap IN A Snap Party on Thursday!! If anyone is interested in scrapbooking, please call me right away or email me right away!! I sent a package filled with goodies to Michael Murphy today! I just really hope he gets it!! If anyone would like to send him a note, that would be fabulous!! He NEEDS MAIL!! So, get out pen and paper and jot a note to him!!! We love and miss you Michael Murphy!! Super Trooper says hi and he misses you too!!! We are working tons with Paytons' "clicker" and he is doing better and better with it each time he uses it!! I am very excited about this! And advancing with it!! We are working hard on donated items for the auction.. THANK YOU EVERYBODY FOR WORKING SO HARD ON THIS!! SO MANY of you have already gotten things donated, and I KNOW how much time and effort goes into this process, and I want to let you all know how much I appreciate it!!! It is a BIG JOB this fighting sma thing!! We need all the help we can get~~~SO THANKS!!!!!!!!!!!!!!!!!! Love to everybody:)

Name:: Vanessa Velez
Email:: shortymama113@yahoo.com
Date:: 04/02/03
Time:: 08:18 AM

Comments

Just want to tell you guys that you are in my prayers and i hope that everything goes well.

Name:: Jennifer
Email:: jp954@hotmail.com
Date:: 04/03/03
Time:: 04:25 PM

Comments

HI EVERYONE. DEBBIE I AM SOOOO SORRY, I COMPLETELY FORGOT ABOUT THE CAR WASH LAST WEEKEND. I AM SO SORRY. I AM ABOUT TO SEND MICHAEL A LETTER. WHAT EXACTLY DID YOU SEND HIM? HEY JEN, I DID ALREADY GO TO THE CHEESECAKE STORE NEXT TO MY WORK(CELEBRITY CHEESECAKE)AND ALSO TO THIS MATTRESS/BED PLACE RIGHT NEXT TO MY WORK. I HAVENT GOTTEN ANYTHING DONATED YET BC ITS SO FAR IN ADVANCE BUT I AM 99% SURE BOTH OF THEM WILL BE DONATING I JUST HAVE TO GO BACK AND HORRASS THEM SOME MORE. I WAS ALSO GOING TO TRY AND GO AROUND TO SOME RESTAURANTS AND STUFF SO DO YOU THINK YOU CAN EMAIL ME WITH WHO YOU HAVE ALREADY GONE TO. I'D APPRECIATE IT SO I DON'T FEEL STUPID WHEN I GO SOMEWHERE AND THEY SAY SOMEONE HAS ALREADY BEEN THERE, LOL. WELL TALK TO GUYS SOON. BY THE WAY DEBBIE, THATS AWESOME HOW MUCH YOU RAISED IN SUCH A SHORT TIME- WAY TO GO!!!

Name:: Debbie
Email:
Date:: 04/04/03
Time:: 11:51 AM

Comments

Thank you Vanessa! And Thanks JENN!! It was a great day~~ we should be having another one in late July!! I will definitely let you know!! We had our scrap booking party last night!! I want to say a HUGE thankyou to all of you that came out to scrapbook with us and to support Paytons Pals!! Leeanna Fatovic, of Scrap in a Snap, held her SECOND scrap book party in which she donates 20% to Paytons Pals!! This was a really great time for us "scrapbookers" and we also got a ton of really cool stuff!! I am not sure exactly what we raised yet, but I will know after the weekend!! THANKS Leeanna, Maura, Cheryl, Haley, MOM, Cory, Kelly, Carole, Jenn Prkaiski, Jamie, Christine, Kim, Marlee, and Jenn Haws!!!! We had a great turnout and hopefully we can do another one late in the year!!! I have so much scrap booking stuff and SO MANY PICTURES that I have decided to hit the scrapbook den one night this month and a few hours of real "scrapping" so if anyone is interested in going, let me know!!! Payton is doing great, we are excited about the weekend coming up so that we can take him out.. We are planning on going to see "Toy Story" on ice in about a week, so I will let you know how that goes.. We are still waiting on hearing from Nova about speech therapy (this has been a LONG PROCESS) but hopefully things will start to roll next week.. We have been going out looking for donated items and everyone is really busting their butts:) to get these items!! THANK YOU EVERYBODY!!!!!!!!!!!!!!!!We need all the help we can get, so if anyone needs letters, let me know!!!!! LOVE TO YOU ALL!!!!!!!!!!!!!!!!!!!!! Have a great weekend!! OH, PS, THANK YOU TRACY AND SKYLAR for that BEAUTIFUL picture!!! I need to send you guys one of Payton, I swear they could be twins!!!!!!! She is SOOOOOOOOOOOO CUTE!! Please give her a kiss from ALL of us down here in FLA. Tracy!!!!!!:)

Name:: MJ
Email:: TWEETYROLL88@aol.com
Date:: 04/04/03
Time:: 06:49 PM

Comments

Hey there! Hope you had a great week! I'm doing alright. I'm so happy Spring has 'sprung'. Unfortunately, it's been kinda chilly here, so Wyatt and I haven't been on many walks. But that's ok because, Wyatt enjoys digging in the back yard. He digs and digs to find his favorite toy...ROCKS! If you want to, you can e-mail Wyatt and he'll write you back. He LOVES e-mail so much! His e-mail address is NewBrnCar4wyatt@aol.com . Please feel free to e-mail him anytime! Have a great week and remember, Wyatt loves you and so do I! Love, MJ - http://www.picturetrail.com/gallery/view?username=bshanson68

Name:: Kelly
Email:: Bella951401@aol.com
Date:: 04/04/03
Time:: 08:07 PM

Comments

Hey Freeman Family :) You guys don't know me, but I'm a student at MSD. For the past 2 weeks we have been working hard to collect money for Payton (and the SMA cause). I decided to check out your website...Payton is adorable and your family is in my thoughts and prayers. Stay strong! Kelly

Name:: Tracy and Skylar
Email:
Date:: 04/04/03
Time:: 09:23 PM

Comments

Hey Payton and Debbie! So glad to hear all is well. We would LOVE a picture of Payton!! You always said he and Sky could be twins. Please~ if you ever get the chance send me one. I moved.. my address is Tracy Murray 33 Eagle Ct. Wilkes-Barre Pa 18706.. Let us know if you do go see Toy Story.. we took Sky to Ssee Sesame St Live and she loved it! Love of hugs from~~still waiting for the warm weather~~ Pa!!

Name:: Meg
Email:: mrosev14@aol.com
Date:: 04/04/03
Time:: 10:32 PM

Comments

Dear Freemans, I am a 17 year old high school student at Marjory Stoneman Douglas High School, and I just wanted to let your family know how sympathetic I am to your situation. You all are my inspiration. Anyone who can deal with what you have been through is truly an angel. My school is working hard to raise money for Payton’s Pals. I would love to do some volunteering for you guys. I have a rigorous schedule, but children are my weak points. I love them all; I aspire to work with special needs children. If there is anything I can do for your family or anyone, even if it is just running to the grocery store to pick something up I would be more than happy to do that. I see that you guys live near Coral Springs, and I live off of 441 one road north of Wiles. Please if there is anything I can do to help do hesitate. With love and prayers, Meghan Vesey

Name:: Debbie
Email:
Date:: 04/04/03
Time:: 10:53 PM

Comments

I have pasted this on from the smasupport.com website so that you all could say a prayer for this sma family... Laura Stants laura@our-sma-angels.com Friday, April 04, 2003 I'm afraid I have another loss to tell you about. Steven Paul Ryan Garland passed away on Tuesday at 16 Months and 2 days old, of SMA Type 1. He was fine that morning, his usual happy self, then that evening he fell asleep on earth and woke up in heaven. His viewing is tomorrow, with the services on Saturday at 2 pm at Hampton's Funeral Home in Knox County, Kentucky. Please keep Sheree and her family in your thoughts & prayers as they too go through this most difficult loss of a child.

Name:: Debbie
Email:
Date:: 04/04/03
Time:: 10:54 PM

Comments

I have pasted this entry from the smasupport website so that you all may say a prayer for the Gardner family.. Thank you.. Mary Bodzo, Krista's mom Bodz13@mfi.net Friday, April 04, 2003 With overwhelming sadness I tell you all that our very good friend, Katie Gardner, age 13, sma 2, passed away on Wednesday night. Please pray for her parents and sisters and all that love her. Krista is very distressed by this as Katie was a very close friend that understood and shared in her life like no one else could. Katie was a beautiful, super smart girl and we will miss her so much. Thanks for your prayers. Love, Mary

Name:: Debbie
Email:
Date:: 04/04/03
Time:: 11:02 PM

Comments

Hi MJ!! We are sending you a package this weekend, so please look out for it in the mail next week!! Give Wyatt a sloppy kiss for us!!:) Tracy, I am sending you a pic of Payton to the new address!! Good luck with the weather! I think it was 91 degrees out today!!!!!!;) You can come down and visit us ANYTIME!! That would be fabulous!! Kelly and Meg, thank you both SOOO Much for visiting and for signing our journal!!! Talia has been helping me organize the efforts over at Stoneman Douglas!! How are things going??? Do you like the pins?? Well, if you would like to visit Payton sometime please email me directly at pjf714@netscape.net and we will work out a time/date!! He LOVES visitors!! THANK YOU so much for working so hard on fundraising with us!! We need so much help to get this CURE thing going and I appreciate you all SOOO MUCH!! It will be because of all the help of our WONDERFUL VOLUNTEERS that we actually see a treatment for this disease one day!!! I just hope and pray that it comes in time for our SUPER TROOPER!!!!!!!!!!!!!!!!!!!!!!! Love to you all and we Love and MISS YOU MICHAEL MURPHY!!!!!!!!

Name:: Debbie
Email:
Date:: 04/07/03
Time:: 11:18 PM

Comments

Hello out there!! I wanted to let everyone that reads this know that Michael Murphy was in a hum-vee accident.. He is ok, thank goodness, but banged up, maybe even fractured, his jaw, and bruised up his leg pretty bad.. He has spent some time in a hospital (I believe in Germany?) and he is very anxious to get back into the action! I know that he spoke with Lori Mawhinney and Becky Welner, both Outbackers and good friends of Michaels! He sounded good to them, and like I said, anxious to get back to work.. So please, say a prayer for M.M. We miss you LCPL Murphy Michael R!!! Hope you get your packages SOON!!!!!!!!! Regina may be getting a job at work hostessing!! This is simply for a little extra cash and even more to get her out and about til she figures out exactly what she wants to do.. Regina just took and PASSED a real estate course, (CONGRATULATIONS REGINA!!) and while she is unsure of ANYTHING really for the future, she knows that she will have plenty of options as far as work goes.. I know that many of you have her and Jim in your thoughts and prayers.. They are definitely going through a really horrible thing and a tough time, but fortunately they have each other and their love is strong. I know that Ryan is looking down on them and helping to keep them strong for each other.. We love you Jim and Regina!! & we miss you and love you Ryan!!!! You were so cute always showing off how smart you were and how STRONG you were too!!! I miss hearing your "eh-heh's" on the phone and your "uh-uh's" too!! There is an sma meeting tomorrow night that we will be trying to attend.. This is for friends and families affected by sma. They try to have one every month or so, and we are never able to go as of yet, but we will probably go tomorrow.. I will let you know how it goes... Work was ok tonight--kinda slow.. I got employee of the month for March!! I won $50 and a new Outback pin.. That was pretty exciting and that is about it.. So have a great night everyone and THANK YOU SO MUCH TO THOSE OF YOU OUT THERE POUNDING THE PAVEMENT AND GETTING THINGS DONATED!!! :)

Name:: Debbie
Email:
Date:: 04/09/03
Time:: 12:27 AM

Comments

Today was a busy day.. We spent the entire day down in West Palm Beach where Payton got his RSV shot and then we went to have his mickey button replaced at the GI.. This took up the majority of our day and my mom and I had OUTBACK takeout for dinner:) Something different, huh?? Hee Hee.. I get 1/2 off whenever we eat there, even if I am off, and the food is just SO good, that we could not resist!! Payton also had OT this morning before we went out and mommy did taebo in the evening.. BUT, THEN, we watched American Idol together (mommys' favorite) Unfortunately, I missed the sma/mda meeting tonight, but I will try to make it to the next one.. Today was just too exhausting to get back out on 95 and go to Boynton.. Plus, Rob worked until really late, so there was just no way.. Payton fell asleep early tonight (I think he was EXHAUSTED!!) and I am getting ready to go to bed myself, just wanted to say hi out there and also say thankyou to the people that have helped with and participated in our "MSD vs. SMA" fundraiser over at Stoneman Douglas!!!! It is turning out to be a huge success and there are still 3 more days left!!! Wish us luck!! I am tempted to bring Payton by to meet the class that wins, but I will have to see how that goes over with the school!! GOODNIGHT EVERYONE AND TAKE CARE!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!:)

Name:: Debbie
Email:
Date:: 04/09/03
Time:: 10:34 PM

Comments

WOW!!!!!!!!!!!! You should see the beautiful cards that were made by Mrs. Janet Gershmans' ESE class at Stoneman Douglas for PAYTON!!!! THEY ARE ABSOLUTELY BEAUTIFUL!!! So overwhelmingly sweet to see them all bound up in the red bow and you could tell that each student put alot of time and effort into EACH card!! THANKS GUYS!! That put a huge smile on our faces!! I read each one to Payton and he seemed especially interested in the drawings! So, thanks for the artwork too!!!!!!!!!!!!!!!!!!! I promise that one day we will bring him to visit you all!! It is hard to do that and I am trying to plan it with my mom and Rob, but I promise we will get it done!! We are working on invites and getting things donated!! I am planning on going out alot next week if anyone would like to join me!!!:) Payton is good, he just got a new bi-pap--doesn't love it too much but it is SOOOO much lighter than the one we have had for 2 years--which is good for all of our backs!! Lugging that thing up and down the stairs every single day was probably causing some of our back problems.. Anyway, he will still sleep with the one he loves and only use the other one intermittently if needed in the day time!! LOVE TO YOU ALL!! GOODNIGHT!! PS~~~ SPECIAL THANKS TO DIONNE RYFF AND NORWEIGAN CRUISE LINES FOR DONATING THE 7 DAY NORWEIGAN CRUISE THIS YEAR AGAIN!!!!!!!!! THIS WILL PROBABLY BE OUR BIGGEST ITEM ON THE LIVE AUCTION THIS YEAR!!!!!!!!!!!!!!!!!!!!!!!!!!!! Love Love Love---

Name:: Debbie
Email:
Date:: 04/10/03
Time:: 07:04 PM

Comments

This was from the FSMA website... Sheree Knox county, Ky shoskins56@ eartglink.net 4/9/2003 11:59:41 PM Steven earned his Angle Wings and went to Heaven to be with God. Wednesday, 2nd of April. Around 1:00pm while he was peacefully sleeping. He was still in good Health.Wasn't sick, God just needed him. I miss you SweetPea. Thanks to all that has helped me keep Steven for 11 more wonderful Months. I will always remember you. Sheree MuMum to Sweetpea

Name:: Debbie
Email:
Date:: 04/11/03
Time:: 10:43 AM

Comments

Hi out there! We are sending out a HUGE THANKYOU TO G-MA ROZ AND BILL for Paytons' Easter gifts!! And of course, for the wonderful swing that we are getting!! As soon as it is set up I will take pics for you guys in VIRGINIA!!!!!!!!!!!!!!!!!!!!!! I am now finally set up to take credit cards!!! How exciting huh?? :) We can take AMEX, MC/VISA, DINERS & DISCOVER TOO!! I will post the cc info at the Help Find A Cure Page!!! Love to you all!!:)

Name:: Tracy and Skylar
Email:: ourlilsky@aol.com
Date:: 04/12/03
Time:: 12:12 AM

Comments

Payton, Payton, Payton... you are WAY too cute! Thank you so much for the picture of you. Debbie you're right, they could be twins! BIG (((hugs)))from still cold Pa.

Name:: Debbie
Email:
Date:: 04/13/03
Time:: 12:48 PM

Comments

I am very sad to have to announce to everyone here, that Daniel Weinberg (Marni's Dad) has lost his battle against pancreatic cancer. He passed away early Friday morning and we will attend his funeral service today.. It will be in Boynton/Boca area and if anyone would like details, please call me asap.. 954-935-6025.. Danny was such an awesome/nice/friendly/generous/sweet/intelligent Man. He had his own CPA practice for MANY years and was very close to Marni. Marni is one of our closest friends and we are heartbroken over her loss.. Please say a prayer for the Weinberg family.. You can also email Marni with kind thoughts at littlemarni@aol.com ..............................Coincidentally in the wee hours Friday morning (1:00am) my nephew Donovan Kade Letter was born to my brother Bobby and SIL Shannon... He was 7lbs. 5ozs. and 18 inches long.. He doing great and mommy and baby were resting comfortably when I called them early this morning.. Briannah was yelling "dad" "dad" "dad" "dad" "dad" "dad" over and over and over while we were talking but she is SOOOOOOOOOO CUTE and she got on the phone and said .. "hi... Deb.. bie.." TOO CUTE! CONGRATULATIONS Bobby and Shannon and Briannah and Shane and your new addition! We love you all! I will be back later....

Name:: Debbie
Email:
Date:: 04/14/03
Time:: 01:11 PM

Comments

Well, I am getting ready for another busy day, week, month, youuuuuuuuuu knooowwwwwwww how it is.....:) Yesterday was awfully hard for us, so many funerals in such a short time.. I felt so horrible for Marni and her brother Bryan.. Fortunately, Marni has SOOOO MANY great friends that were there to support her and Danny had an extremely large group of people that gathered to honor him and his life. You could feel how much he was loved, but really more than that, you could feel how much HE LOVED his family and friends. He was a great man and will be missed by many. Marni, if you ever need ANYTHING, you know that we will always do anything for you.. We love you very much... Andrea, if you are reading this today, please give me a buzz this week about centerpieces.. I know you have a handle on the theme/etc.. & I want to make sure those are working... We are working on tickets/invitations/legal issues/and DONATED ITEMS!!! Any tips? Ideas? Let me know!!! I am getting ready for PT, and then must go to work.. Mom is in the KEYS with dad, how nice is that huh?? SHE SOOOO DESERVES IT!!!!! Have a great day every one!!! Love, Deb

Name:: Wanda Dodaro
Email:: wdodaro@yahoo.com
Date:: 04/14/03
Time:: 04:50 PM

Comments

Hello Deb, Rob and Payton, Just stopped in to catch up on what has been happening with you all. I am so glad to hear Payton is getting his new swing, we are also trying to get a swing for Samantha. The new switch toy sounds wonderful, what is it called? We are working with a speech therapist right now that is looking into some new stuff for Samantha to help her communicate with us better. Your event sounds like it is coming along well we are just starting to work on our golf tournament it will be in October. I would love to learn more about the auction part as we have always just done the raffle thing and maybe the auction would bring in more money. If and when you ever get some free time (haha) maybe you could email me a little note about how the auction part works. I believe last year we had around 100 items that we gave away through the raffle and some of them were really cool things that probably could have raised some big bucks. Well give Payton some great big hugs and kisses from Samantha and me and we will chat again soon. Wanda & Samantha (sma type 1 - 3yr 3mths old)

Name:: Debbie
Email:
Date:: 04/15/03
Time:: 02:06 AM

Comments

HELLO out there... Hi Wanda and Samantha!! I sent you an email with lots of details!! Let me know if you have any questions, etc!!!! What a crazy night at work. It is so unusual to have a busy Monday, but every once in a while, you have one.. It is actually nice, because the night goes by fast--just a wierd night though... Payton and Rob did well without me all day... I think that the shop must have missed Rob and he had to go BACK to work when I got home (at almost midnight) but he is home now and fast asleep... I, unfortunately had my share of caffeine tonight, so I will be up for a while.. Probably finishing up the last of my letters to mail out for donations, etc.. It seems that we are a lot more successful when we are out and about, asking IN PERSON for these items---showing Paytons' pics and the article in the sun-sentinel, but the letters get to people that we just can't go visit.. Like, Oakleys' corporate office for instance.. I may not hear a word from them, BUT, I can't just STOP BY their office in California either, so we do our best.. Wish us luck! We have sent out HUNDREDS of letters.. I will be back out this week, probably Friday and Saturday working on items for auction, so let me know if you know someone or want to come with us!! It is fun too!! I must share with you all, that THE EASIEST way to handle this is, when you are out and about, SPENDING YOUR MONEY, ask for a manager.. ask them if they are able to do anything to help with a fundraiser, let them know about Payton and Ryan and all of the other children that suffer from sma, show them the article in the paper, or a pic... the worst they can do is say no, but you would be surprised at how many will say yes.. You MUST have a donation letter with you though!! It has ALL the details and our tax ID #!! SOOOO, if you need one, let me know! I will mail you one, email one or just drop one by!! WHENEVER I am out during the day (night is not as good) and I am eating or shopping I almost always ask.. Lots of places will tell you that they cannot help at the "store-level" and that it must go through corporate, but lots of places CAN help!! Good luck and LOVE TO YOU ALL!!!!!!!

Name:: Wanda Dodaro
Email:: wdodaro@yahoo.com
Date:: 04/16/03
Time:: 08:42 PM

Comments

Hello Deb, I just read your previous posting that you sent me an email with lots of details but I hate to tell you this but I did not get it. I am hoping that it is still in your system and you can resend it without retyping it, Sorry!!! I also want to say that we do the same thing for our fundraiser that you just mentioned about about going door to door and you get such a wonderful feeling when you are able to walk away with things for the fundraiser. For those of you who have never done this before It is scary and a little hard right at first but once you get past the 1st one it gets easier and easier. Do not get discourage when one manager tells you no just keep on trying different places and you will get things, especially gift certificates from resturants and stores.... Good Luck to you all!!!

Name:: Debbie
Email:
Date:: 04/17/03
Time:: 07:13 PM

Comments

Whoa.. am I tired.. It is exhausting going out ALL day and asking for donations!!! We went to about 16 places today!! We will be out again tomorrow!! HUGE THANK YOU TO ALL OF YOU WORKING SO HARD TO GET DONATED ITEMS!! And special thanks to those that are going out door to door and asking.. I know it is very difficult to do it and scary because we are all so afraid of being rejected, but honestly MOST people are great and for every JERK, there is about 10 nice people!! At least!! I promise!!! I will be going out tomorrow and Saturday and every weekend til the benefit, so if anyone would like to join me, let me know!!!!!!!!!!!!!!!!!!!!!! Payton is great, LOVE TO YOU ALL!!:)

Name:: Debbie
Email:
Date:: 04/18/03
Time:: 09:25 PM

Comments

Today we got pictures of the Swimming Hall of Fame, where the event will be held.. The VIEW is breathtaking! We are over looking the intracoastal and it is really just an amazing view!! We are figuring out how we will set up media etc.... Looking forward to the benefit and saving some babies!! Talia told me that she had a dream that Payton was treated and better and I was telling her how hard it was for me to explain to him what it was that he had and how devastating the disease WAS.......... Not a bad dream huh??? I pray for that every day, all day long and if I am alive to see ONE SMA CHILD CURED I WILL be one happy mom. Love to all!!

Name:: Debbie
Email:
Date:: 04/19/03
Time:: 08:25 PM

Comments

I would like to say a huge HAPPY EASTER to all of our friends and extended family out there!! We had a lovely visit from Regina and Jim tonight, they came by to see Payton and brought him a HUGE Easter bunny balloon and read him the easter bunny book and Payton just had a ball talking & talking & talking to them!! I hope that everyone has a great day tomorrow~~ I will be at the Outback most of the day (BUT, I will be off for Mothers Day!!:)) and it will surely be a little crazy there!! HAPPY EASTER & LOVE TO ALL!!

Name:: Tracy and Skylar
Email:: skylarshopechest.com
Date:: 04/20/03
Time:: 08:58 PM

Comments

Hi Payton!!!! We wanted to stop by and wish you a very HAPPY EASTER! Hope you had a great day. Sky is a bit sick but she still enjoyed the day. (((HUGS)))

Name:: debbie
Email:
Date:: 04/21/03
Time:: 11:14 PM

Comments

Thanks Tracy!!! Hugs to you and little Sky too!! VERY BUSY weekend here, work was crazy tonight~~ Regina had her first shift hostessing!! (she is doing this just for a bit of a distraction and to really just get out of the house & into the "real world" without having to dive in, ya know?? She was there for about 4 1/2 hours~~did a great job and was SOO cute hostessing with the other girls! Everyone really seemed to like her and I know she will fit in just perfect til she figures out what she wants to do for work!! We absolutely loved our card (Reg & Jim) It was quite beautiful! THANK YOU!! Things are moving right along with the benefit, I just found out that Shannon got another PUPPY DONATED TO THE EVENT!!! We are just THRILLED with this news!!!! If anyone has any connections or friends that they think would like to donate, just let me know or give me buzz and I will contact them!! Payton is doing great, he had a lovely day yesterday with grandma grandpa daddy and great grandma too!! They went down to the dock and walked around the block and Payton especially liked when Rob pushed him fast over the speed bumps, he kept asking for more whenever Rob would do it!! SUCH A BOY!!!! Well, I hope everyone had a great holiday~~ I am looking forward to Mothers' & Fathers' Day because I know I will be off of work~~ Love~LOVE~Love!!

Name:: debbie
Email:
Date:: 04/22/03
Time:: 11:45 AM

Comments

this is from the FSMA journal...Lyn Staff (mom of Sarah type1 Salmon Arm, BC CANADA lwstaff@telus.net 4/17/2003 8:14:57 PM Type 1Sarah Jane Staff took her last breaths in my arms today at 2:00 at Canuck Place, Vancouver. It was very quick and quiet. She was surrounded by those who loved her.... Thanks for all your kind thoughts, love and prayers.... We will be going home tomorrow. Lyn and Family

Name:: marni
Email:: littlemarni@aol.com
Date:: 04/27/03
Time:: 10:57 AM

Comments

DEAR DEB, ROB AND SWEET PAYTON, WELL, I FINALLY HAD A CHANCE TO CHECK OUT THIS SITE. WOW!!! IT IS AWESOME. DEB, YOU ARE AWESOME! I DO NOT KNOW HOW YOU DO IT, BUT YOU ALWAYS DO! THANKS SO MUCH FOR THE KIND WORDS YOU WROTE ABOUT MY DAD. I MISS HIM SO MUCH. I CANNOT BELIEVE HE IS REALLY AND TRULY GONE. IT JUST DOES NOT SEEM "REAL". I STILL FEEL LIKE HE IS ON A VACATION AND WILL BE BACK SOON. I KNOW, IN TIME, THINGS WILL GET EASIER, BUT THE VOID IN MY HEART WILL NEVER GO AWAY. DEB, YOU ARE SUCH AN INSPIRATION TO ME. YOU NEVER GIVE UP AND YOU WILL ALWAYS KEEP FIGHTING. JUST ONE OF THE MANY REASONS, I LOVE YOU AS MUCH AS I DO!! PAYTON IS SO LUCKY TO HAVE YOU AS HIS MOMMY, ROB IS SO LUCKY TO HAVE YOU AS HIS WIFE AND I AM EQUALLY LUCKY TO HAVE YOU AS ONE OF MY DEAREST AND CLOSEST FRIENDS. I LOVE YOU FOREVER. MARN

Name:: Debbie
Email:
Date:: 04/27/03
Time:: 12:25 PM

Comments

WOW, time goes by so fast.. It felt like a day or two since I had been on here and it is almost a week!! It really goes by so fast, it is crazy... MARNI!! We love you so much!! You are and always will be very close to my heart and I will always be here for you and so will Rob and PAYTON TOO!!! We need to spend time together soon, so let me know when you can!! Roz, we go the wonderful print that you sent with Paytons name and the meaning etc.. I really thought it was right on!! Didn't you?? We are in the middle of getting the whole house painted--it hasn't started yet, but will soon--so I will make sure it gets up as soon as that is done! Yesterday, Jenn H. and I spent the ENTIRE day trying to get donations for our spring benefit! We had a wonderful day and covered the entire Beach Place in Fort Lauderdale! There has been so much going on that I have been running like crazy, but things are going well, and moving forward.. I think that things will be harder for us now, as we gather info about so many businesses and their corporate addresses etc.. and find out face to face how they handle charitable donations and then in the years to come our jobs will be a whole lot EASIER!! I sure hope so anyway!!! :) Well, we are (Rob and I) going to see Def Leppard tonight (yes, I know we are old!!) thanks to my wonderful MOTHER and I am just hoping it doesn't rain as it has been POURING HERE ALL WEEKEND!! Payton is great and even though you'd think he is wondering what all the scuttlebutt is about, I think that he is just plain used to chaos and has probably grown rather fond of it anyway!! Hee Hee. He is actually doing really well though--he is going to be transferred over to the broward county school system soon and hopefully that will be smooth--We had our SSI interrogation last Thursday and he came with us to the appointment and fell ASLEEP!! He is so funny.. They didn't tell us if we are getting kicked out or not, but they were nicer than usual, so that was a nice change.. Probably only because Payton was there I am sure.. UM, there is probably so much else to talk about but I need to let my brain unfrazzle for a couple days, and we'll talk more:) Love to you all--Deb:)

Name:: Debbie
Email:
Date:: 04/30/03
Time:: 12:31 PM

Comments

OK, so it is POURING again today but yesterday was nice.. I really like the rain to be honest because it makes for a cozy day at home and lord knows that we are at home quite often.. A few cozy days are nice for us!! We had a problem with one of our long-time nurses (she had been coming for two years) the other night.. She apparently was working a couple of different jobs for a couple of different nursing companies and managing to work at least 70 hours a week (that is what we know for sure) but it seems that she may have had yet ANOTHER job and therefore was working 7am-3pm 3pm-10pm and then 10pm-7am for us... Now, I don't know of anyone that can handle THAT schedule even if it is only four days a week!!! I really would not have even known or worried about that BUT, she had made a couple of VERY SERIOUS mistakes in our home that honestly were life-threatening.. I over-looked it the first 3 times (she had somehow stepped on the bipap plug so many times throughout the night that the plug actually fell out of the backup battery and Payton started suffocating because the bipap and hose and mask were strapped to his face and the bipap wasn't even ON!--She did this THREE times) because I thought that she just plain made a mistake and you have no idea how hard it is to find a GOOD nurse, that YOU get ALONG with, that your baby LIKES, that will come on TIME, NOT MISS DAYS, and that you TRUST with your child so that you can actually SLEEP!! Now, we had all those things with this person for so long, that we didn't think that it was anything other than a couple of really bad MISTAKES... BUT, then there was ANOTHER mistake that was even worse.. She turned OFF the pulse ox, so that she could recharge the machine (it started blaring because it was losing its' charge) and then went downstairs, found the charge plug, plugged the machine in, and LEFT THE HOUSE.. Well, when I woke up Payton was fine, THANK GOD.. But, the pulse ox was off and if God forbid, anything had happened or loosened up or whatever, I would not have known about it because the pulse ox was OFF!! (His bi-pap doesn't have an alarm)SOOOOO, THIS WAS PRETTY BAD.. YET, we still thought about keeping her here, for nothing really happened and I guess we just weren't thinking.. (It is devastating to have a nurse taken off your case that has been coming for so long-not to mention we LOVED her and she LOVED Payton) Anyway, the other night Paytons' pulse ox was beeping (not so unusual--it will beep if you turn him or change his diaper--just because the toe tab is being moved) and for SOME WEIRD REASON Grunt (our most keen American Pit bull-dog)started barking at ME.. He has never done this before, so I jump out of bed, without thinking and just walk directly into Paytons' room.. THere I find him desating fast 71--69--64-- and I ask the nurse (same nurse by the way) what is wrong.. She says "he's dropping" I say yes, but what's going on and she says again "he's dropping" so it is obvious to me at that point that she has no idea what is going on.. I ask her to move so that I can get close to the baby and try to figure out what is going on.. As I get closer to him I realize that the bi-pap is ON, but he is not taking any breaths.. SO, I lean close to his face (his body was facing the wall) and I ask Payton honey, why aren't you taking a breath and I lean in I notice that the HOSE IS NOT CONNECTED TO HIS MASK--IT IS JUST LAYING THERE NEXT TO HIS FACE.. Now, if you are an sma parent you understand this a little better than most and you are probably like ohmygoodness...Payton was wide awake and making what little breath sounds he could... eeaahh...eeaahh...eeaahh...He was basically suffocating... And after that I had very little sleep thinking to myself over and over that this has become someone that I feel that I cannot trust with my VERY FRAGILE child.. And the shame is that I used to be able to, before she started working this horrendous schedule... WELL, the next morning I explained everyhthing to my day nurse and she and I also came to the realization that Payton NEVER sleeps well when that certain nurse was here (we originally thought it was feeding issues for the LONGEST time) and all of sudden I realized that Payton was probably sensing or feeling danger or just plain NOT IN SAFE hands when she was here and therefore had a BAD night EVERY time she came.. Well, I am sure that you are guessing what happened next. We had to take her off of this case. I can't tell you--it is sort of like losing part of your family, but EVERYTHING we do is "what is best for Payton" and the it was more than obvious what had to be done.. We had a nurse last night that Payton hasn't seen in about 5 months and he slept like a champ!! (JUST LIKE HIS MOM!!:)) Well, that is our nursing stuff, other than that all is great with our nurses, and we REALLY do have WONDERFUL nurses that come here that are like FAMILY TO US!!! We are working hard every day on benefit stuff, I will be out all day next Monday with Jenn H. (my mom will be with Payton)so that we can tie up loose ends with some auction items!! ROMERO BRITTO has donated a framed print to the auction!!! THis is HUGE FOR US!! We are also getting tons of gift cards and certificates to restaurants and stores in the area!! Let me know if you have any ideas!! We will be getting our invitations out soon, and tickets will be printed this year and sent out to those that are attending the benefit!! Take care everyone!! LOVE LOVE LOVE...

Name:: Debbie
Email:
Date:: 05/01/03
Time:: 12:18 AM

Comments

Hi everyone!! I just wanted to send out a very special message to the people that work so hard to help me set up the BENEFIT!! I am sure that you all can imagine that a lot of work must go into setting this affair up, but you really could never see just how much TIME and EFFORT and ENERGY--Did I mention TIME??--goes into getting this thing up and running!! Special thanks to JENN HAWS--KELLY ERNST--MARIA GILES--LORI MAWHINNEY--DIONNE RYFF--TAMARA BAKER--CAROLE HALL--MY MOTHER--MY MOTHER(she deserves to be mentioned Twice!)--SHANNON BEATTY--GABE COX--ADI RAPPAPORT--DIANE HAWS--JEN BERMAN--ANDREA FRYDMAN--MY HUBBY & TALIA SOLOMON, without whom I would not be able to accomplish 1/3 of what gets accomplished!! The details are mind-crushing/brain frazzling.. BUT, in the end it is ALL WORTH IT!!! We are truly just BABY STEPS away from a cure--thanks to all of you that go so out of your way to help us in SOOOO MANY WAYS!!!

Name:: Amy Barnett
Email:: lilynnathansmom@aol.com
Date:: 05/01/03
Time:: 01:05 AM

Comments

Hey Deb!!! I am just catching up with everything again. We got Lily the "box" thing you talked about with Payton..we haven't used it YET but will begin. It is pretty cool but I don't think it is the same thing you have...is it the cheap talk 8 direct and scan??? We also got Miss Spoiled butt Lily a swing and she LOVES it!!! What kind of swing are you getting for Payton? We go one of those HUGE 3 person swings from Wal-mart, take the cushions off so she lays flat and swing away! She loves it so much!!! Hey I ALSO noticed that you are sending pictures out to Tracy and Sky (hey girls) and I WANT A PICTURE OF PAYTON TOO!!! Well...I will talk with you later! Hugs to you guys and Lily sends Payton HUGS AND KISSES (she is a little flirt isn't she??).

Name:: Debbie
Email:
Date:: 05/03/03
Time:: 11:07 AM

Comments

HI Amy Barnett!!! I absolutely will send you all a pic!! The swing we are getting is the one in the catalog (the PT catalog).. He SOOO LOVES IT when we are at PT, so I just know it will be a lot of fun for him at home! WE JUST GOT THE PILLOWS from Ethan and his family!!! THANK YOU SO MUCH FOR THIS WONDERFUL GIFT!! You have no idea how much we have ALREADY implemented them into our routine!! EVERY SINGLE ONE OF THEM!! I usually just use rolled up blankets, so this was such a huge gift for us! THANK YOU!!! Angie, I don't have your address, and I'd love to send you a pic, just email it to me at your convenience!!! We would like to send out a HUGE congratulations to a few GRADUATES this year!! Holli Freeman, Jackie Mailhe & Kelly Ernst are all graduating this week!!! CONGRATS GUYS!! LOVE TO YOU ALL:)))

Name:: MJ
Email:: TWEETYROLL88@aol.com
Date:: 05/04/03
Time:: 12:36 PM

Comments

Hello friend! Hope you are doing well and having a great week. I've had a great week! The weather has been very nice here and Wyatt and I have really enjoyed it! What have you been up to? I hope you are feeling well and having a great day! Love your buddy, MJ - http://caringbridge.org/ny/mjpurk/

Name:: Jennifer
Email:: jp954@hotmail.com
Date:: 05/06/03
Time:: 04:39 PM

Comments

HEY DEBBIE. IT'S JENNIFER. I WAS WONDERING IF YOU WERE STILLO GOING TO BE STAYING IN THE HOTEL BY THE BEACH THE NIGHT OF THE BENEFIT AND IF SO DID YOU FIND OUT THE RATES BECAUSE RODD AND I MAY WANT TO ALSO STAY THERE. I HOPE EVERYTHING IS GOING GOOD AND I WILL TALK TO YOU SOON.

Name:: Debbie
Email:
Date:: 05/06/03
Time:: 11:28 PM

Comments

HI OUT THERE!! I want to say a HUGE thankyou to the girls that have been busting their butts getting things donated!!!! There is so much work involved and you all KICK BUTT!!! JENNIFER!!! HOW ARE YOU?? Yes, you are right--I actually have several rooms that I need to reserve for that night--I will email as soon as I get the particulars--I am actually waiting to see which has the best deal, but I will know very soon!!!! Work was good, I am worn out--Payton is going to Palm Beach tomorrow--I am feeling a bit under the weather so I think we will BOTH get looked at!! LOL!! Keep me posted of any auction--etc.. info that you all might get!! AND THANK YOU SO MUCH ROZ, MY FAVORITE MIL!!!:) for my MOTHERS DAY GIFT!! I just got it TODAY!!! I will spend it with JOY!! Talk to you soon, hope all is well with you and Bill in VIRGINIA!! LOVE TO YOU ALL-HAVE A GREAT NIGHT!!!!!

Name:: Regina Nolan
Email:: regnolan@aol.com
Date:: 05/07/03
Time:: 01:07 AM

Comments

Hi Deb, Rob and my precious little man Payton! I miss you Pyaton and need to come see you soon. I hope you have a good day tomorrow. Debbie, I just wanted to say THANKS...for everything! I hope you wake up feeling better tomorrow and your day brings good happy moments. Give Payton a big kiss for me and tell me when I can stop by. I think he actually likes me now! I have so much love for him in my heart and only wish my Ryan could have hung out w/him more. Well, I know you have a long day tomorrow and I'm sending all my good energy your way so that your day is a little less challenging! Take care and try calling me when you get a chance.

Name:: Debbie
Email:
Date:: 05/09/03
Time:: 12:59 PM

Comments

Hi out there!! Sorry it has taken me so long to write!! I have COMPLETELY lost my voice due to some upper resp. type cold and we have just been really careful and really praying that Payton doesn't get it!! It is ridiculously difficult for me to keep things going with the benefit with no voice at all but I am hoping that I get my voice back by tomorrow??!! We will see.. I really hope so though because we have our biggest day of donations planned and I would hate to not be able to really participate in spreading the awareness... Payton has been doing great so far but we are watching him really closely to make sure he stays well!! I want to say thankyou to all of you that sent me Mothers Day cards!! They are beaitiful and I hope that all you mothers out there have a GREAT day that day!! You ALL DESERVE IT!! Motherhood is a pretty tough job, not one that any of us would trade or change for anything, but certainly a pretty serious 24/7 job that you must be on your toes for--NO SLACKING.. I think you all deserve weekend getaways complete with massages, facials, the whole nine yards, but if that is not do-able breakfast in bed/flowers/dinner out will be just fine!!!!:) LOVE TO ALL YOU MOTHERS but ESPECIALLY TO MY MOTHER, without whom I would be a complete mess and probably be locked up somewhere babbling to myself each and every day... THANK YOU MOM for being the best mom ever my whole life and then stepping up and being super mom/grandmom when Payton came into our lives and proving that some mothers really belong in some sort of hall of fame!!! Love you mom, and Payton and Rob does too!!! Have a great weekend everybody!!!!

Name:: Debbie
Email:
Date:: 05/09/03
Time:: 01:09 PM

Comments

PS.. Thanks to you too Regina!! I don't know how I would have gotten this far without you and Ryan and Jim too!! I hope this weekend is not as crappy as you expect it to be.. Please know that you have always been and always will be an amazing mother and believe me you stand out among the rest of us.. You truly gave up everything that was yours and never wanted ANYTHING for yourself, not even TIME to do as you please, and gave every single breath of energy to Ryan and made his life the absolute best it could possibly be.. I knew Ryan, and that little boy was as happy as could be and had EVERYTHING he asked for and you were on hand 24/7 as his mommy and he could never have asked for a better mom.. I don't know many people that could have survived 5 1/2 years barely leaving their home and NEVER leaving their childs' side, and being perfectly happy with the situation.. as long as Ryan was happy.. You really ARE a GREAT mom and I will always be inspired by your lack of selfishness when it comes to being a mom.. It is what you were cut out to be...We all love you and will be thinking of you this weekend..

Name:: g-ma roz
Email:
Date:: 05/09/03
Time:: 10:26 PM

Comments

Hi Payton, its g-ma roz. I want to thank you for my really sweet mothers day card... it was so thoughtful of you.I love you and will see you soon .......kisses to your mom and dad also........more kisses for you though! Love you!

Name:: MOMMY
Email:
Date:: 05/11/03
Time:: 12:03 PM

Comments

HAPPY MOTHERS DAY!!!! To all you mothers and grandmothers out there that deserve about 2 months dedicated to your undying love, patience, commitment, selflessness, courage, strength, care, sacrifices and devotion to your children and grandchildren!! What an amazing job, huh?? Have a great day ladies!! You all deserve it!!! And a special mothers day wish to all my sma mom friends out there!!! You are all amazing women!!

Name:: Debbie
Email:
Date:: 05/13/03
Time:: 05:14 PM

Comments

Ok, wow, our auction item list is getting pretty big--we have all been working our butts off and it is starting to really pay off!!!!!!!!!!!!!! Be ready for some really great items on the auction this year!!!! I am very happy with the hotel arrangements the night of the affair--we got a special rate for people attending the benefit right near the event so if you are interested in staying at the beach that night or that weekend for a special rate please email me at pjf714@netscape.net and I will get you in touch with the group sales lady that is helping us!! Roz, we already have you taken care of along with Ryan and Jamie, Kelly, Jenn Palmese, Jenn H, Carole, Amy, mom & dad, Lori (maybe) and Ricardo.. Anyone else just let me know!!!!!!!!!!!!!!!!!! Also, we MUST have information for the auction booklet IN by the 25th of May (this is really cutting it short-so please get your info in!!) Our printer is going to kill me as it is, so please get me that stuff as soon as possible.. If anyone has any donation items please get them to me, or let me know what they are asap too, because I need to list them in the auction booklet!! Kelly will be sending out tickets to those that are coming to the affair, so be looking for them!! Roz, I will keep yours for you here!! Payton is doing great thank goodness--things have been hectic around here but he is a super trooper as always!! And speaking of super troopers--WE MISS YOU MICHAEL MURPHY!! I soooooooooo hope that you can make it to the event this year!! THat would be such a treat!! Love to you all!!!!:)

Name:: Debbie
Email:
Date:: 05/14/03
Time:: 02:58 PM

Comments

We had trouble with a couple invites not getting where they were supposed to go, so if you have not yet received your invite please email me right away at pjf714@netscape.net and I will make sure one goes out to you immediately!!! LOVE LOVE LOVE~~~Deb

Name:: MJ
Email:: TWEETYROLL88@aol.com
Date:: 05/14/03
Time:: 06:05 PM

Comments

Hey buddy! How have you been? Hopefully great! If not, feel better right away, okay? I have to go to hospital again soon. :-( So, if you don't hear from me, don't worry, I'll be back really soon!!!! Remember I love you and stay well! Huggles (haha a new word) MJ - www.caringbridge.com/ny/mjpurk

Name:: Payton
Email:
Date:: 05/16/03
Time:: 02:36 PM

Comments

Hey everybody!! Howz it going MJ?? Hope you are feeling better and out of the hospital soon!! Hope all you mothers had a great mothers day!! I am really looking forward to the event on the 7th and my mom already has an outfit picked out for me so that I am looking pretty cute that night!! Can't wait to see everybody--thankyou so much to all you girls (& guys) that are out there working so hard on the auction and the benefit!!--gotta get back to BUGS LIFE!!! Love, Payton:)

Name:: Debbie
Email:
Date:: 05/19/03
Time:: 11:56 PM

Comments

Howdy friends and family--Wow.. I really wouldn't know where to begin with all that we have been up to.. BUT, most importantly, Payton is doing great!! He had PT today and was NOT thrilled at all, but he made it through and then PASSED out in the car.. Pretty common when it is rough on him.. He goes again tomorrow--don't think he will be too happy.. We took him to the MALL this past weekend and it was great.. He liked it, and we had a good time.. Lots of people check Payton out, esp. when they see the pulse ox, but no one gawks or anything.. It is always interesting to me how little children will look at him and you can tell that they realize right away that something is wrong and that they want to get near him and be close to him.. It is sort of weird--it happens alot--I think that kids have some sort of bond with each other and want each other to be able to play, etc.. Who knows--but they ALWAYS look at Payton like.. Hmmmmmmmm...... I think it is good for people to see a child like Payton--just to know that there are kids out there that need help--I hate that so many sick kids NEVER get exposed to the public and therefore they sort of don't exist to the normal people out there.. ANYWAY, I am rambling, I am tired, and must go to sleep... HOPE ALL IS WELL OUT THERE>>>>>>>>>>>>>>>>>> LOVE, Deb

Name:: Debbie
Email:
Date:: 05/21/03
Time:: 11:52 PM

Comments

I wonder what is going on out there in the sma world?? I have not kept up on any websites at all lately--I hope and pray that everyone is well and finding peace in a very crazy, busy world.. Things have been hectic around here, but we are very excited for the benefit and hope to raise a ton of money for sma!!!! I want to wish LILY BARNETT a VERY HAPPY 2nd birthday!! She will be 2 on the 30th of MAY!!! WOW!!!! It is so wonderful to see other sma children reaching that milestone that so many doctors say they will never reach (textbooks too!) I hope you and your mom (AMY!) have a FABULOUS BIRTHDAY AND CELEBRATE A BEAUTIFUL LIFE!! Everytime I look at Payton I can't help but think that we are the lucky ones.. So many people go through life never being able to feel the love that we feel for our children or appreciating their children the way that we do.. I know that all parents love their children but when your child is terminally ill, it is a whole different ball game.. Your life will be changed forever and you will never look at things the same.. The things that mattered to you before are quite ridiculous and the precious moments that you share with your baby, the way they smell, the way they look into your eyes, THAT is why life is good, and why it is worth living.. I spent alot of time before Payton wondering what the hell my purpose was, what I was destined to be doing?? And it became very clear once Payton was born, and then when he was diagnosed with sma, it REALLY became clear.. I just hope that we, as a family, as a unit, as a huge group of people fighting sma, can make a real difference... Good night everybody, I hope that none of you ever have to watch your child eat through a tube, get the mucus and blood suctioned out of his mouth and nose, lay on a couch unable to move or lift their own head, drool because they are unable to swallow, and try to talk, but just don't have the breath support to say mom, or I love you.. Even though I know they do.

Name:: Tracy and Skylar
Email:: ourlilsky@aol.com
Date:: 05/23/03
Time:: 11:06 PM

Comments

Hey Debbie, Here is Skys update I just posted on skylars hope chest website....~ Skylar Saranchuk ~ Also.. we (well Kim M is) are doing pins for the FSMA conference. The kids that arent going to be there will be sponcered. Could we sponcer Payton!! We'd LOVE to!!! Journal Tuesday, May 20, 2003 9:59 PM CDT Hello.. Sky went to see her pulmonary doctor today (first time in over a year). First off, he was beyond happy to see Sky. He couldn't get over how long she has gotten (37 7/8in). He was amazed. He also liked the fact that she was a whopping 17.8 pounds. He said that her overall outlook pulmonary wise was excellent and she fooled tons of people. He was happy with the way she looked and the whole overall look of her. The only concern he had with her was her scoliosis. He is afraid of it compromising her respatory wise. He knows that surgery is not an option though for quite a while. Sky did her her new TSLO ad we are quickly working her up into wearing it 23 hour a day. YES 23 HOURS!! He also hear a murmur in her heart but didn't seem too alarmed by it. So we had an EKG done and we will take it from there. Overall it was a good day at the docs. Odd, but it was! Dr Perez is such a great doctor. I totally lucked out with him and his knowledge of SMA. He even met Dr Bach before he had Sky as his patint.W even had a quick visit with the nurses who take care of her (No we didn't take her into the ward). They were so excited to see her. Its been a long time (knock on wood) and we like it that way. So that was our day. Now we are waiting for 2 more weeks when Sky turns 3!!!!! Give Paytons some HUGS from us!

Name:: Debbie
Email:
Date:: 05/25/03
Time:: 01:03 PM

Comments

HI Tracy and Sky!! You are going to be THREE SO SOON!!! WOW!!! Payton will turn 3 shortly after Sky (July 14) It is amazing what troupers our kids are!!! Can more than one person sponsor your child?? Brenda and MJ just asked to sponsor Payton at the fSMA conference but if you both can, that'd be great TOO!!! Do you need a pic?? Let me know or email me so I can send you one if so! The amount of stress that builds up before the benefit is quite large--I thank God that I have so many people helping me as the years go by--I could NEVER do this alone, certainly not to the level that it is at now.. We are on our 3rd year of raising money for sma--I can't tell you how important it is and how much it sustains our well-being and peace of mind knowing that we are getting closer and closer to a treatment and that we are a part of all that.. I can't imagine watching Payton like this everyday and not doing everything I can to make sure that other kids have a chance in the future.. ALL KIDS DESERVE A YOUTH. I doubt anyone disagrees with that. Have a great Sunday everybody. Love, Deb

Name:: JENNIFER
Email:: jp954@hotmail.com
Date:: 05/27/03
Time:: 11:36 AM

Comments

Hey Debbie. It is Jennifer. I was wondering if you can give me a call whenever your free because I had a few things to discuss with you. I wanted to bring a friend and I was wondering can you pay at the door or do we need to pay in advance because we did not get any invitations in the mail. Also, please do not forget that I have my friend Diana volunteering with us as well that i think you said you will have her in charge of the auction table. Oh by the way, has anyone heard from Mike Murphy? Is still over in the Middle East? It would be so nice if he is back in time for the benefit. Oh, also Rodd wanted me to ask how formal it is going to be this year. I know the 1st year, everyone was very decked out and then last year when he went- i had him get a suit and there wasnt so many guys dressed up as much so he felt kind of overdressed. I know it is at a much nicer place this year though so i just wanted to get an idea of what he should wear. Well i have a few more things to discuss so please give me a call whenever. 954-650-5575.

Name:: Tracy and Skylar
Email:
Date:: 05/27/03
Time:: 04:24 PM

Comments

Hey Deb! We could NEVER get too many pictures of Payton!!! Send them anytime you want and can. ;o) Thats right, Payton will be 3also soon! YIPPEE!!!! What size is he in now? Are you stil at S. Hemingway Cr?

Name:: Debbie
Email:
Date:: 05/28/03
Time:: 11:01 AM

Comments

Hey Everybody!! Jenn, it was good to talk to you the other day--I will definitely call you this weekend to figure out the Details of the shirts, etc.. I Need two of you selling raffle tickets til the dinner starts and then the four of you can stay at the "shop!" LOL Michael is still over there but I am not sure when he is coming home or of any details since he called Lori M--She said he was still the hospital but recovering and in good spirits... I am sure he is back with his platoon by now--I know he got a ton of packages from his friends back home and I hope he got to eat all those damn cookies and crackers, etc..!!!!!!!! We MISS YOU MICHAEL!!!!!!Tracy, Payton is in 3T and I have been using the Po Box.. The address is: P.O. Box 667498 Pompano Beach, Fl. 33069 I just sent you and MJ a pic of Payton--I hope it is big enough!!! Let me know if you need more! Things are beyond hectic with the benefit.. We are so excited to be coming close to the "day!" It has been a lot of work and alot of SWEAT for a lot of us, so I know that we all look forward to raising a ton of money for sma!!! Love to you all!!!:)

Name:: Frank & Claudia
Email:: Frank33063@hotmail.com
Date:: 05/28/03
Time:: 01:46 PM

Comments

Hello Robert, Debbie and Payton...Well it's almost that time again, time to raise some big $$ I wish the best at this years fund raiser, the third time is the charm.... $$$ Claudia and Myself will do our best to be there, we plan on it, It's just a very busy time, we are driving to Texas tonight, for Claudia's brothers graduation, then we come back and move, would'nt you know we have to be out of our house on June 7th, hopefully everything will go smooth, We are moving to W. Boynton , 25 miles away, far for someone who has been in this area for 24 years. Moving will be the worst part of it......I just want you guy's to know you are alway's in our thoughts and prayers, and I wish I saw more of you guy's. Since Claudia has Melyssa I have gone to full-time dad very quickley and it can be a challenge. (Needless to say) Rob and I alway's used to talk about when we get older how will it be ??? (I guess we are finding out) from our little circle of Townhome friends at least we all keep track of each other, I guess since we have grown up and gained more resposibility, change happens.... Rob and Debbie, my family always talks about and ask's about you guy's....I/We just want you to know, We love , and care about your family....... : ) Boy, it seems like yesterday, i was your main doggy sitter......time flies, it's scary.....times have changed.....Love all of you and HOPE VERY MUCH to see you all at this years fundraiser..... God willing. No matter what, it will be a success, no question about it..... Love , Frankie, Claudia and Melyssa. Keep fighting Payton , we love you. :-) God Bless.

Name:: Debbie
Email:
Date:: 05/29/03
Time:: 08:41 PM

Comments

It was good to hear from you Frankie!! Say hi to Claudia and Melyssa!!! We are really looking forward to our third year with this event! It seems to be bigger and better each year, as we fine-tune every little detail!!... I want to say thankyou SOOOOOOOOOOOOOO MUCH to the girls who have been essential to making this happen over the last several weeks!! Kelly, Jenn H, Jen B, Lori M, Dionne, Maria, Regina, Carole, Andrea, Diane, and of course, my wonderful MOTHER!! & also those that have gone out of their way to volunteer/get donations and spread awareness, like Kim B, Talia, Mary, Shannon and many others...You guys know who you are and how hard you have worked, but I want to acknowledge you here for your individual commitments to the fight against sma, and on a personal note, I would like to say thankyou for being people that I know I can COUNT ON ALL THE TIME and you are ALWAYS there for me/Payton/our cause. I really COULD NEVER thank you enough for what you have given to me and my family and I just pray that you know how much I appreciate it, and really how overwhelmed I am at your lack of selfishness and sense of friendship/love/commitment/generosity. You ALL amaze me. LOVE LOVE LOVE-Deb

Name:: Debbie
Email:
Date:: 05/29/03
Time:: 09:16 PM

Comments

OOOPSS!!! I almost forgot!!! Jen P.. You are on my wonderful helper list too!!!

Name:: Debbie
Email:
Date:: 05/31/03
Time:: 09:47 PM

Comments

Very busy day--We were so thrilled to take Payton to see "Finding Nemo" at the movie theater today.. He definitely liked it!! There were two slow parts that he complained about (he thinks mommy and daddy or grandma can CHANGE it when he complains!!) but the rest of the time he was thrilled! We also went with my sister Amy and her boyfriend Brian and we all had a great time--the movie theater was PACKED--people were sitting in the aisles, but it was still great... Work was crazy last night--busier than in a while... I am still getting stuff for the auction so if you have something for me, just bring it over or give me a buzz--the auction booklet will go to print on Monday--May 25th was the last day to get your messages in but the printer has been putting it together all week... We are sending tickets in the mail when you purchase entry to the benefit so PLEASE let me know if you haven't received yours yet!! Payton had his meeting for transition into the school system last week--seemed to go well so far--we will see--We JUST got our PAYTONS PALS PINS in (the larger nicer version of our small event pins) These pins are $10 a piece and will be on sale at the event and at work, so if anyone would like one, just let me know!! Lori M. will have them at work! UMMMMMM I think that is it for now.. Jen P.. Rob is working on the shirts so as soon as they are finished I will buzz you at work so we can meet (probably Tues or Wed) Volunteers should be at the event by 5pm--I look forward to seeing you all very soon!!!!!!!!!!!!!!!!!!!!!!!!!LOVE DEB:)

Name:: JACKIE
Email:: PRNCSS0413@AOL.COM
Date:: 06/01/03
Time:: 10:39 PM

Comments

HEY DEBS, PAYJAY, AND ROB JUST WANTED TO SAY HI!!!! I'M SO EXCITED ABOUT THE EVENT AND EVEN MORE EXCITED THAT MIKE MIGHT ACTUALLY BE ABLE TO MAKE IT BACK HOME IN TIME TO ATTEND. I'VE ACTULLY TALKED TO HIM TWICE TODAY AND HE SOUNDS AWSOME...CAN'T WAIT TO BE HOME!!!! DEB, I WAS WONDERING IF YOU WOULD BE NEEDING EXTRA HELP DURING THE EVENT AS WELL, SINCE I MISSED OUT ON ALL THE THINGS YOU ALL HAVE BEEN DOING WHILE I WAS IN TALLY. I REMEMBER THE FIRST EVEN I HELPED WITH STUFF DURING THE AUCTION, SO LET ME KNOW OF ANYTHING...ANY ODDS AND ENDS THAT NEED TO BE DONE DURING OK. PLEASE DO NOT HESITATE. OK WELL HERE'S MY NUMGER IN CASE 954-292-8709. GIVE PAY A HUGE HUG AND KISS FOR ME AND TELL HIM I CAN'T WAIT TO SEE HIM. XOXOXXO JAX

Name:: MJ
Email:: TWEETYROLL88@aol.com
Date:: 06/02/03
Time:: 12:26 AM

Comments

Hi there! How are ya? Hopefully you are feeling GREAT today! Wyatt says he hopes you are having good weather! Stay strong and well! Good luck with the fundraiser. We will be thinking of you. Brenda says we want two pins and two XL tshirts when they are ready!!! I am still home sick!!! UGH!!! Can you believe I want to go back to school...but when they tell me I can, I don't want to!!! Go figure. Big hugs are coming your way, Payton, my little buddy!!!!! Love your buddy, MJ - http://www.our-sma-angels.com/Margaret/ www.caringbridge.org/ny/mjpurk NY Hugs and Hope www.hugsandhope.com

Name:: Tracy and Skylar
Email:
Date:: 06/02/03
Time:: 12:01 PM

Comments

Hi Payton and Debbie! We wanted to share the link to SKylar story that was in the paper today.. Here it is... http://www.timesleader.com/mld/timesleader/5992241.htm

Name:: Debbie
Email:
Date:: 06/02/03
Time:: 11:49 PM

Comments

Hey Everybody.. How are things?? I hope all is well out there!! I have been very hectic as I am sure you imagine.. My plate is overflowing this week, so if I forget something, please let me know!!!!!:) Jack, we are pretty set with volunteers but if I need anything the day of I will call you and there will be all kinds of stuff going on at the event--Call me when you get a chance--is there a possibility that Michael Murphy will be there?? THAT WOULD BE PHENOMENAL!!!! Let me know!! Are you going with Jim?? MJ... We heard about your streaking party!! You better be careful trying new shades!!! NO blues, ok?? ALso, we are sending out huge hugs to you since you have been sick lately!! GET BETTER SOON!!! I will send you guys pins tomorrow! I am also sending pins to you Michelle! Tracy, Sky and Dave, it is so funny cuz knowing how much Sky looks like Payton and is so similar in weakness as Payton I know that your article is so much like what/how we live.. You guys should be very proud to take on all that you must take on at such a young age.. I know that it would have been twice as hard for me to do all this at 23-24-25 etc.. I always think about you guys and I pray for a cure for all of our little sma angels out there.. They deserve it so much--((Hugs)) to you guys...The article was fabulous, and THANKS for having the guts and perseverence to SPREAD AWARENESS like you do. It is the ONLY way that we will save these children. Hello Amy and LILY!!!!!!!!!!!!!!!!!!!!!!! We, everyone here in south florida basically, want to wish LILY A HAPPY SECOND BIRTHDAY!!! I haven't been on the computer at all but we thought about you on the 30th and WISH YOU THE BEST BIRTHDAY EVER!!!!!!!!!!!!!!!!!!! YOU ARE ONE AMAZING LITTLE GIRL!!!!!! And so is your mommy!!! Hope it was fantastic day for you both and your family too.. These birthdays are not just birthdays--they are milestones--they are miracles... See you all this weekend--Love, Deb

Name:: Jennifer
Email:: jp954@hotmail.com
Date:: 06/03/03
Time:: 09:48 AM

Comments

Hey Debbie. It's Jennifer. Whenever you have the items, give me a call either at work or on my cell or at home. Definitely need to get together some evening this week. I can go to you or you can come to me whichever you prefer. I do not get off early at all this week so it would have to be after 6pm unfortunately. When I see you, I also need to get some pins from you for my work and also for my mom to bring to her Outback up there. That would be so great for Mike to be home to go the event. I'll pray for him. Well hope to hear from you soon.

Name:: Debbie
Email:
Date:: 06/04/03
Time:: 11:50 PM

Comments

GOOD NEWS!!!!!!!!!!!!! Michael Murphy is on his way HOME!!! And even MORE GOOD NEWS, is that he will be able to make the event on Saturday!!! YEAH!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! How fantastic is that?????? We talked earlier today and he sounds in good spirits, we are just so THRILLED that you are home and home safe Michael!!! And we are ALL looking forward to seeing you this weekend!!!!!! LOVE LOVE LOVE:) We are no longer sending tickets out as we are too close to the event, so if you haven't received your tickets before the event, just go to "will call" and they will be there waiting for you!!!! THANKS EVERYBODY FOR HELPING SOOOOOOO MUCH TO MAKE THIS HAPPEN!! WE LOVE YOU ALL~~

Name:: Holli
Email:
Date:: 06/06/03
Time:: 02:44 PM

Comments

Hey Debbie, I know that you are so busy right now preparing for the benefitt. Troy and I are almost on our way. I just wanted to tell you that I put up the letters you sent to me at work to get some donations before we came to the benefit. I'll give you all I collected when I am there. Also, much to my surprise I met someone that had a nephew who had SMA. His name was Marshall, and he passed away last December. I gave him your info for his siter-in-law to contact you - I hope that is ok. Also his nephew's website is www.marshallpotter.com. I looked at the website and it is alot like yours. They live in Massachusettes. It was nice to meet someone who had this in common - he knew exactly what I was talking about when I told him about Payton. Hug and kiss Payton for me, and we'll see you tomorrow. Holli

Name:: Jayme Stewart
Email:: prncessjayme@aol.com
Date:: 06/06/03
Time:: 03:49 PM

Comments

Payton you are always in our prayers. God Bless You!

Name:: Marshall's Mom
Email:: info@marshallpotter.com
Date:: 06/06/03
Time:: 11:34 PM

Comments

Hi Debbie, My name is Laurie and I have been directed here by Kathy Cowan, and by my brother-in-law, Casey, who met up with Holli recently. I don't know how they met or began talking about SMA, but nonetheless, they did. We lost our little boy, Marshall, to Type I in December. I'm thrilled and excited about all of your fundraising efforts - there is nothing we'd like more than to see that cure! We've got some huge events planned also, one on 6/13 and one on 6/29. Keep fighting - we're getting closer! Please feel free to contact me some time. All the best to you, your husband, and especially to adorable Payton! Laurie Potter www.marshallpotter.com

Name:: shaina rappoport
Email:: shaina@ourshootingstar.com
Date:: 06/08/03
Time:: 08:44 AM

Comments

dear debbie, rob and payton, last night was amazing!!!!! thank you for making jacob such a big part of your third "so many angels" benefit. we (along with the rest of our family and friends) were really touched. together we WILL find a cure. payton- i hope you had fun at your party! it was so good to see you last night! love, love, love, shaina, adi, jordan and our angel jacob. p.s. the first thing we did when we got home last night was try on our "jacob" t-shirts- thank you!!!!!!!

Name:: Marty Offenther
Email:: Promomarty@aol.com
Date:: 06/08/03
Time:: 01:34 PM

Comments

Thank you Debbie / Rob and all your incredible support staff including Outback. What a fun time last night for Payton and all his Pals the film was exceptional as well the speakers who were there. I certainly hope we're another step closer to a cure with the help of this benefit. You all have an incredible spirit inside of you. Marty & Shelley Offenther/ SB&J Enterprises

Name:: kim olaughlin
Email:: poko@peoplepc
Date:: 06/09/03
Time:: 08:07 AM

Comments

Saturday nights benefit was absolutely wonderful. I am sure the money that was raised that night, out- did last year and the year before. Debbie and Rob; I must say, you two are the most wonderful, dedicated and loving people I have ever met. I know you will say; "If it was my child I would do the same things." This may be true but I have to say, Payton is very lucky and blessed to have such a great family. Debbie, your mother is the best!!! She is always there for Payton. I just didnt realize that some body needs to be actually up with Payton 24 hours a day. He looks absolutely beautiful. I bet he will get the Nemo DVD when it comes out!!! Are you going to be doing something for his birthday in July? So sorry we haven't been around to visit him, we really need to bring the kids over to see him. Well just had to say that the benefit was fabulous!!! Love You Guys, Kim, Peter, Luke, Eric & Alina O'Laughlin

Name:: Pamela May
Email:: pamela@dunhills.com
Date:: 06/09/03
Time:: 01:22 PM

Comments

Hi Deb, Robert and Payton, Congratulations on another wonderfully orchstrated event! We all had a really awesome time and hopefully it was equally profitable. I really enjoyed seeing everyone--- new and old faces. Payton is really getting so big! Do you have anything planned for his third birthday? Please keep me and Michael updated. Talk with you later. Love, Pamela

Name:: Michael Murphy
Email:: murphdog0352@aol.com
Date:: 06/09/03
Time:: 01:28 PM

Comments

Miss Deb,Rob, and Super Trooper, just wanted to stop in and let you know how much fun i had the other night at the event, it just keeps getting better every year! And believe me i was sooo happy when they told us we would be in Fla. by Saturday, honestly the entire time in Iraq i kept saying,"if i can just make it hiome for paytons event ill be happy" so imagine how stoked i was to hear id be home for it. And on that id just like to tell you how much i appreciate the letters,packages and prayers, words cannot express how much i appreciatred it.And just so you know paytons pals was aboard for the fight i wore my pin on my flack jacket(bulletproofvest) the entire time.Once again thanks for everything and cant wait to start helping out with everything again. Talk to you soon. Michael Murphy

Name:: Preston Russell
Email:: Dblout1@aol,com
Date:: 06/09/03
Time:: 03:40 PM

Comments

Name:: Tony Diaz
Email:: ADiaz@ssr-inc.com
Date:: 06/09/03
Time:: 03:54 PM

Comments

Hi Deb, Rob & Payton I wanted to let you all know that i really enjoyed the Fund Raiser Saturday night. You Guys did a fantastic job. I'm SORRY I missed the first 2 but I won't miss any more. It was great to see Payton out at the Event and fun to see all the faces I have not seen in a while. I took the pin that I bought and stuck it on my board at work. I know Payton's birthday is coming up, little Victoria and I would love to come and celebrate his birthday. Now you have my E-Mail address or you can relay through Michael and Pamela. See Ya !!! Tony

Name:: Debbie
Email:
Date:: 06/10/03
Time:: 01:14 AM

Comments

WoW................................ It has finally come and gone... I can't tell you the amount of weight that has been lifted from my body............FIRST, I want to thank everyone that has written on the site since my last entry!! !I LOVE reading all of your thoughts and comments!! It makes me feel like I am not the only one that reads this journal!!! You know, it is really overwhelming to me and to Rob too, just how much everyone is commited to this fight and commited to helping save Payton and so many other children like him... I know for you that were there at the event, you could see just how much it weighs on Rob & I by our "tough" time talking.. We do not break down very often at all, we are strong and MUST be strong for Payton, but when we REALLY think about things and REALLY think about what Payton is up against and REALLY think about what the future holds, we are OVERWHELMED to say the least.. We are just regular people. Yes, we are strong and we have handled this situation as best we can. But no matter who you are, things begin to wear on you and AGE you and STRESS you out, etc.. Between fundraising, caring for Payton, work, our marriage, dealing with lifes' issues, emotional trauma, always feeling like we are in a 911 mode, the beeping of machines, trying to get sleep, etc, etc, etc, sometimes things get REALLY tough. BUT, somehow, (Must be someone up there helping us out a bit) we make it through and we stick together.. I will not lie, there are times that things are beyond tough--Rob and I pretty much get divorced every year around the benefit, because things get to be too much and we both are trying to put things on each others' plates and our plates are already overflowing... This parenting thing is alot more than we had ever expected... We would not change anything though.. Having Payton is THE most wonderful thing that has ever happened to either one of us. We are not good people because we take care of Payton--we are good people BECAUSE of Payton. Love for your child and the protection of that child is something more fierce and with more strength than any weapon you will ever find... I hope that you all got to see the memorials for Jacob and Ryan on the tables.. That was what Rob was trying to talk about when he spoke.. How watching a 5 year old in his little casket and blues clues balloons be lowered into the ground, was the worst day of his life... He meant that... These kids are dying and Payton is on that line.. He is in that group.. The clock is ticking. Not just for him but for thousands of kids and we are SO CLOSE to a treatment.. When Dr. Baumbach said she sees a treatment happening sooner than people think--she meant that.. Things are happening and it is just a matter of time.. BUT, how much time can we spare??? Ryan didn't have any left, neither did Jacob.. We are doing our best to make a difference and it is not us that is making that difference--it is YOU GUYS. We could NEVER do what we do, without the people that are behind the scenes--MAKING IT HAPPEN.. YOU ARE GOING TO BE RESPONSIBLE FOR THE CURE FOR SMA--All we did was bring you a little angel to share. He is quite an angel too, he really is--for as compromised as that little boy is, he is STILL ALIVE and doing quite well.. Every doc and nurse--they all say the same thing--Don't know what you're doing? BUT, keep doing it... The event was an UNBELIEVABLE night and A HUGE SUCCESS--we are still making the final count--but it looks to be about $60,000 for sma!!! That is just completely amazing and I am so proud to know that we have made a huge impact on the research for a treatment for sma!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! We are already in talks for next year--ways to fine tune things, we are growing and need to work with the growth each year--we are definitely in need of more volunteers--people that are willing to get a little more involved in what we are doing.. Michael, I need to talk to you about security issues (you and Jimmy) and Andrea, I know that we will be a ton of stuff together this year.. Carole, I would like to get you more involved too.. Kim B, We talked about that a bit, and Talia too... If anyone else is interested in getting more involved please let me know!! We can only pull this off with LOTS OF HELP!!! I will never pretend that I can/do any of this on my own--there is absolutely no way--I do alot, but without my "Super women" (& men too:)) helping me, it just would not be possible.. We are planning a walk/run for the fall--a HUGE garage sale for the end of the summer (I am starting to collect that stuff now, so go ahead and drop it either at my house or Robs shop) a couple of car washes and of course, the benefit next year--as much as I love the swimming hall of fame--it is just too small--so next year we will most likely be at a hotel in east Fort Lauderdale... If anyone knows of a great venue for about 4-500 people or of a venue that will donate, please let me know right away! AND, I would like to say THANK YOU to all of you that have helped in our fight against sma in ANY WAY!!! The words thank you could never express just how much we appreciate all of you, but please know that we do, and if any of you EVER NEED ANYTHING FROM US< JUST SAY THE WORD!!!!!!!!!!!!!!!!!!!!!!!!!!!!!~~~~~~~LOVE LOVE LOVE~~~~~~~~~~~~~~~~~~~Deb, Rob and Payton

Name:: Jennifer
Email:: jp954@hotmail.com
Date:: 06/10/03
Time:: 11:42 AM

Comments

Hey Debbie. I just wanted to say that the benefit was a blast and I feel that you guys definitely raised more money than last year. I plan on saving money up so i can spend some money next year. I always kick myself in the butt when i am broke when i go to this. Please let me know about the car washes, and the garage sale and the walk. I would definitely be interested in helping out. I definitely have some ideas of things for next year for the item selling. Those cute woman sweatpants things sold out and Diana was wondering if she can order some through Rob like in any color they have and for her and her sister, so maybe you can find out from Rob how much they are. Also we had a lot of requests for bags for people to put their things in so maybe we can start collecting bags from Publix and Winndixie and just use those. Also a lot of people were looking for kids clothes. From toddlers to teens. I know we had the little sweatpants outfit for the toddlers but not just regular shirts. You can definitely count Rodd and I in for next year and hoepfully my mom will get to go as well. Please let me know if you need help with anything, I am here. I will be calling you soon to meet up with you bc i have money and pins to give back to you. Talk to you soon. Jennifer

Name:: Frank & Claudia
Email:: Frank33063@hotmail.com
Date:: 06/11/03
Time:: 09:05 AM

Comments

Hello, I see Everything went well, That's great ! I knew it would. We are very sorry , we did not make it. The moving truck was FIVE hours late ! Did not expect that. We were pulling into to our driveway at 6:00 pm. Our bed was not put together until 7:30 or so. nevermind everything else. We really felt bad,but we just could not make it. I called Gary to give him updates to pass on to you guy's, I know it would have been impossible to reach you guy's that day. Well, we are glad you raised even more $$$$$ Congratulations. I hope you guy's underdstand. Keep us up to date about Payton's big 3 year B-day bash. : ) Talk to you soon..... Love Claudia, Frank and Melyssa. I pray we do not move again for a long time..... No fun. : ( At least it's over now...... Love from all of us. : ) Hi Payton. :-) Kisses.....

Name:: Sue O'Neill
Email:: TheONeills@our-sma-angels.com
Date:: 06/11/03
Time:: 04:51 PM

Comments

Hi Debbie! Wowwweeee! Congrats on your hugely successfull fundraiser! I've never done a fundraiser on your scale before, so I am in awe! What a lot of time, effort and love you and your family and friends have put into the event AND the events you do all year long!! Oh, did I tell you about my first Outback experience??? We FINALLY got an Outback in Vermont a couple of years ago but with both boys...well, you know, I don't get out much!! My sister and I went a couple of weeks ago and had a really nice meal--chicken and ribs that melt in your mouth!! I wonder if they would carry Payton's pins up here?? If you know of a way I can go about asking, let me know! And, I wanted to let you know that Casey is getting a wish trip to Disney/Sea World, the first week of December of THIS YEAR!! Any way you can come visit with us???!!! Casey is getting spinal surgery next week and I am freaking out...I am soo nervous but we've got to do it. I guess that's all my news. Colin is doing pretty well. Visit our web site for some updated photos of the boys: www.our-sma-angels.com/oneills Hugs to Payton from us way up in Vermont!!~~Sue~~

Name:: Amy and Lily Barnett
Email:: lilynnathansmom@aol.com
Date:: 06/11/03
Time:: 10:28 PM

Comments

CONGRATULATIONS PAYTON, DEBBIE, AND ROB on your HUGE sucessful fundraiser!!! WAY TO GO! You guys are great and amazing! Lily said to tell Payton hello and that she enjoys looking at his pictures alot (but of course her heart belongs to Colin O'Neill).....we of course would LOVE to see more pictures of Payton too :) Thanks for all the hard work in raising money for that CURE!!!!!! HUGS to you all!

Name:: Deb
Email:
Date:: 06/12/03
Time:: 07:48 PM

Comments

Hi everybody!! Hi Jen, Frankie & Claudia, Melyssa, Sue and FAMILY, Amy & Lily!!!!! Thank you everybody for all the kind words and thoughts about the benefit!! It was a wonderful night and we feel a lot of satisfaction knowing that we have contributed to what will one day be a CURE for sma!!! I am still working on wrapping up details and money stuff--I will then start the Thankyous!! That will be a big job!!! There are about 500 thankyous that will be going out--and then it will be on to the next things--we will be working on a new venue pretty early next year, so that we can start working on things a bit earlier--trying to get things to run smoother and smoother each year-- Andrea, it turns out that the box of centerpieces is in my sisters Car?? I just found this out, did Rob tell you?? SO, maybe the candles are in there?? Just so everybody knows there about 10 centerpieces left, so if you want one let me know--they are $25.. These were a HUGE hit at the event--we sold every single one that was there, but there was a box that never made it to the hall of fame... I would like to send out a huge thankyou to the people that helped us during the "crazy" part of the evening--there were some real angels helping us out during the chaotic part of the event!! Jen B, Kelly, Dionne, MEGAN(YOU ARE AMAZING!!), & her honey, Kim B, Jamie Joy, Lauren and ANYONE else that is slipping my mind right now--that was a difficult time to keep your head on straight and I appreciate you guys so much!!! I also want to thank my loyal and loving and dedicated "t-shirt, etc" people!! Jen P, Rodd, Diana, and their friends are always there for us when we need them!! We love you guys!!! You had another girl there--Maria?? I am sorry I am forgetting her name!! THings were a little hectic! Please tell Diana that I am ordering more sweats for everybody so I will let you know when they come in!!! ALSO, I would like to thank some people that dedicated a lot of time and energy to helping make this event happen and without them it just would not have been possible--Jen B, Kelly, Jen H, Dionne, Maria, Lori M, My mom, Carole, Regina, Mary, Andrea, all of Coral springs Outback, all my commited volunteers, all of the outbackers that donated their time, all of Robs' customers/clients, everyone in my neighborhood, the sun-sentinel, channel 10, Sid Snyder, University of Miami, Firstat & all of Paytons Nurses, Matthew Green, Outback Steakhouse, Casey Rockerman, National, PRemier, SOuthern, Budweiser, Yovino Printing and SO MANY OTHERS!! IT takes alot of people, a lot of time and a lot of love to save these babies!!!! THANKS EVERYBODY!! I LOOK FORWARD TO SEEING YOU NEXT YEAR!!!!!!!!!!!!!!!!!!!!!!!!!!

Name:: Tracy and Sky
Email:
Date:: 06/13/03
Time:: 05:41 PM

Comments

Debbie, Rob sweet Payton and everyone else.... You guys are amazing!!! What a great job you all did and I must agree with Amy.. WOW. Maybe some you we will take a LONG road trip and be there with you. But with all you are doing.. maybe soon there will be no SMA!!!! Love you guys!!

Name:: debbie
Email:
Date:: 06/15/03
Time:: 01:14 AM

Comments

Hi Tracy and Sky!! (Thank you guys!!) We want to send out a HUGE HAPPY FATHERS DAY out there to ALL you fathers!!! We hope that is a great day for all of you...Did I forget to send a pic to anyone?? I am sending stuff to Michelle W... but I feel like I am forgetting someone or maybe a couple someones.. My brain is really starting to completely unfrazzle so just remind me if I am forgetting... Love Love Love~~The Freemans

Name:: Debbie
Email:
Date:: 06/15/03
Time:: 01:18 AM

Comments

Ps.. We received some gifts for Payton in the mail from Idaho but with no card--they were all wonderful and also very sweet but we do not know who it came from, so if you are out there please let us know! We wanted to send you a thank-you note!!!

Name:: Debbie
Email:
Date:: 06/17/03
Time:: 08:12 PM

Comments

HALO WORLD. How are things?? Payton is good--thank goodness--He has PT tomorrow, RSV soon--SSI is giving us a hard time as usual--Rob had a GREAT Fathers Day--We are looking forward to a break from fundraising for a couple of months-We won't be doing anything til the garage sale at the end of the summer.. We are writing a huge check to the University of Miami in a couple of weeks & then we will be going down there to plan a couple of projects for the future including "sma day" where anyone and everyone can be tested for sma carrier status(since 1 in 40 people carry the gene-this might be very interesting) It will be a huge part of how we can spread awareness about sma, with a lot of information to be shared and testing going on all day.. If anyone has any ideas please let me know!! PS>. We are able to take credit cards now, so if you are interested in making a donation but would like to pay by credit card, please call 954-935-6025. We are having a big meeting tomorrow night to discuss the re-vamping of the silent auction, so that we do not encounter any kind of chaos in the future.. We have grown quite a bit in our 3 years and we need to be prepared for the amount of items that we have on the auction in addition the amount of people that are bidding, etc.. I have pins for sale ($10) teddy bears for sale ($10)--they say Paytons Pals on them, very cool sweat pants in size S/M for sale ($20)--Jen P--call me about Diana's--I have set them aside--and we have regular tees for ($10) sale and girls tees (very comfortable nice tees ($10) I will try to get pics of them up on the site as soon as possible but that is what I have for sale--oh, also I have about 7 centerpieces left from the event--they are $25 and they are AWESOME--they sold like hotcakes at the event--We love you all--have a great night!

Name:: jennifer
Email:: jp954@hotmail.com
Date:: 06/19/03
Time:: 09:20 AM

Comments

Hey Debbie, Diana just wanted me to ask you if the pants you have say Payton's Pals on them or if they are just the plain pants and also what colors are there? Thanks Jennifer

Name:: Debbie
Email:
Date:: 06/24/03
Time:: 12:32 AM

Comments

Halo out there!! Just got home recently from work--not busy at all--Payton is good.. He is sleeping soundly.:) We are embarking on the collection of garage sale items, so if you have anything that you can part with, please drop it off to me, or to Rob at the shop.. He has gotten a storage unit for work/home and he has graciously offered for us to keep our "CRAP" in there during collection time!!:) It will be held at the end of the summer (last or third week in August probably) and we will hold it for the whole weekend (Sat & Sun)--we will not have another garage sale until 2004, so come on out and shop if you like as we are getting rid of EVERYTHING!!!! :) We have a car wash on the 26th of July (Sat. from 9am to 1pm) at our usual gas station--if you would like to know more please email me at pjf714@netscape.net After the garage sale we will not have any fundraising til the walk/run in the fall and after that we will be focusing only on the benefit in June... If you have any ideas or suggestions, please email me!! I guess that is it, have a great week everybody!!:)

Name:: Debbie
Email:
Date:: 06/24/03
Time:: 01:38 AM

Comments

With the hectic schedule surrounding the benefit I had forgotten to mention some interesting facts about carrier status within our immediate families... I have mentioned some of these facts in earlier journal entries but I will reiterate, so that everyone can be up to speed.. Rob and I are both obviously carriers and while we only have a 25% chance of having an affected child we had our first child and he was affected with SMA.. (FYI..every time we have a baby, odds are 25% chance of having an affected child like Payton... 25% chance of having an un-affected child[not even a carrier]... and a 50% chance of having a carrier....These are the odds EVERY single time two parents that carry the sma gene, conceive a child... Now, for me to be a carrier, at least one of my parents has to be a carrier.. If both of my parents had carried the gene, my chances of being a carrier would be 50%, but if only one of my parents carry the sma gene, well, then the odds would STILL be 50% for me to be a carrier... and 50% that I would not be a carrier... NOW, we, as a family, did a whole lot of testing.. First, it was Payton, then Rob and I, who both in fact, carry the deleted or mutated gene that causes sma. (Sometimes, oddly enough, one of the parents will not show that deletion but that is VERY RARE) Then, my brother was tested (his wife was pregnant while they were waiting for test results) I think my brother was shocked and very disappointed to find out that he carried the sma gene.. His wife was tested shortly after his results came back and they were negative.. (thank goodness. they have 2 children together and one from a previous relationship) The children that they had together each have a 50% chance of carrying that sma gene and will most likely be tested in the future... Next was my mother and father.. While they could obviously BOTH be carriers (as one in 40 people carry the gene--and just because they didn't have an affected child does NOT mean that they don't both carry the gene) they were not.. My mother carries the sma gene.. My father does not.. This meant for a lot of people on moms' side of the family to consider testing a little more seriously.. Family members on dads' side breathed a little easier.. I don't believe that dads' side is completely free from worrying about sma carrier status, but they know that Paytons sma came from the other side of the family, for a fact.. Next, was one of my aunts on my moms side.. She tested Positive for the gene.. Her husband will surely be ttested too in the future but they do not have any kids as of yet.. Next, was my brother in law.. and his wife.. They were just about to be married when they tested the BIL first (this is Robs' brother) he came back Positive for the sma gene.. Then his wife was tested and she came back negative.. They have one child and she has a 50% chance of being a carrier like me, like Rob, like my brother, etc.. Then my sister was tested.. She came back Positive for carrying the sma gene.. Then her boyfriend (Soon to be fiance) was tested.. He came back negative for the sma gene.. IF they have children, their children will always have a 50% chance of being a carrier of the sma gene.. THEN, my 2 cousins on my moms side were tested (they are the daughters of one of my moms sisters--who is afraid of needles and was not tested)Both cousins came back negative for the sma gene.. Then, my grandmother (moms' mom) was tested.. She came back Positive for the sma gene.. My grandfather on my moms' side has passed away, but it is fairly safe to say that he is PROBABLY not a carrier.. I don't know how comfortable I am saying that, but whatever... THEN, my moms' 1/2 sister (my grandma had a baby when she was a teenager and gave it up for adoption--this child was not the daughter of my grandpa) was tested and she came back negative for the gene... THEN, my Sister in law was tested and she came back Positive for the sma gene.. her boyfriend will soon be tested (soon to be fiance??:)) Next, was my mother in law (Robs' brother has a different father than Rob so we assumed that mom was the definitive carrier) she came back Positive for the sma gene.. And, I believe that is all that have been tested so far.. EVERY SINGLE ONE of our siblings carries the sma gene.. I hope that if nothing else, you can see how there are SO MANY carriers of this gene, and that there are probably more than we even realize because there has not been adequate testing done for sma carrier status.. PLEASE, if someone related to you has sma, GET TESTED!! BE A PART OF THE SOLUTION TO SMA!!!!!!!!!!!!!!!!!!! Goodnight everyone and THANKS for reading!!!!:)

Name:: Frank & Claudia
Email:: Frank33063@hotmail.com
Date:: 06/24/03
Time:: 11:45 AM

Comments

Hey guy's how's everything ?? I hope well. I'm sure everyone is busy as usual. Wow ! That last note you had written Debbie, is very interesting. Claudia and Myself have been thinking of having a child. All those stats, make us want to get tested. We are still a little while away, but it's info. That is very important. Thanks ! We have to get adjusted w/ the house and new location and all that good stuff. Melyssa is away for the Summer, we miss her.... She has many weeks left before she comes home. :( anyway, I think Claudia has some more stuff to drop off to Rob for the next sale. Maybe one day the four of us could go to the movies or something. We are only a 1/2 mile north of Boynton Bch blvd and 441. It's kinda empty up here. Not really too bad though. Closer than Michael and Pamela for sure : ) Tell your mom and dad hello, and Rob. I can never get in touch with him ( I know he has a crazy schedule ) tell him I said hello, and it's almost football season. : ) and of course hugs and kisses for Payton. Talk w/ you guy's soon. Frank & Claudia S. :-)

Name:: Tracy and Sky
Email:: ourlilsky@aol.com
Date:: 06/24/03
Time:: 02:25 PM

Comments

Hi Payton Debbie and Rob. We are back from the FSMA conference!! I must say~ nothing truly interesting went on besides the hopes for a clinical trial next year with SMA patients. Wish you were there!! Sky had a GREAT time with all her friends. WE got to meet Jim and Regina Nolan! What amazing people and they are so strong to have attended this year. Love them to death and I was so happy to meet them. Debbie, I would love a tshirt from you. Just tell me what to send and where. Talk to you soon. (((hugs))) Payton Love, Tracy yand Skylar www.our-sma-angels.com/Skylar

Name:: Debbie
Email:
Date:: 06/24/03
Time:: 04:47 PM

Comments

Congratulations Frankie & Claudia on your new home!!! I know you must be lonely in it without Melyssa for the whole SUMMER!!! We should definitely try to get together soon.. Robs' schedule has been more hectic than normal but we can figure something out!! Tracy & Sky--Regina told me all about the conference and meeting all of you guys!! I must admit I am a bit jealous to have not been able to go, but one of these years--we will make it there!! Regina said the girls were sooooooooooo cute!!! You must try to get down here sometime!! You definitely have a place to stay if you do!! AMY TOO!!! THANK YOU to those of you that are testing yourselves and your relatives for sma carrier status--I know it gets a little confusing but it comes down to this--IF you test, you bring AWARENESS to the disease... THE MORE AWARENESS, the FASTER we will find a CURE. SIMPLE AS THAT. Have a great night--Love, The Freemans:)

Name:: Holli
Email:: holliatl@hotmail.com
Date:: 06/25/03
Time:: 11:00 AM

Comments

Hey Debbie, Payton and Rob, That is a long list of carrier's that we all know. I guess I didn't tell you that Troy was tested and he came back negative. We just moved into our new house and I have some stuff you may use in the sale. Not sure what you want or need? If you are interested I can have Troy ship it. Let me know. I hope the computers he sent are useful for what you will need. Tell Payton Hi, and that his birthday present is on the way, and give him a big kiss. Holli

Name:: shaina
Email:: shaina@ourshootingstar.com
Date:: 06/25/03
Time:: 01:44 PM

Comments

hi guys- we got back from the fsma conference a few days ago and i've been thinking of you. sunday morning they showed an incredible video and payton's picture was on it (the adorable one of him in his blues clues costume). adi wore his payton's pals t-shirt one day while we were there. while it was harrd to be there without jacob, we got to meet many of the incredible kids we are fighting for. they are truly amazing. okay- i have to make a day to come visit payton soon- i miss you guys! love, shaina

Name:: Tracy and Sky
Email:
Date:: 06/25/03
Time:: 11:03 PM

Comments

Debbie, That IS an offer we might take up sometime!!! I would LOVE to FINALLY meet Payton.

Name:: Debbie
Email:
Date:: 06/27/03
Time:: 11:34 AM

Comments

Hello out there!! Holli, I would definitely appreciate the stuff for the sale--anything at all and Rob has a storage unit for work now so I am using that to store all the "Stuff"--- that got a little out of control over the past couple years!! Congratulations on your NEW HOME TOO!!! Everyone seems to be moving--I just heard that Jamie and Ryan are looking to move too! I guess we will be joining that group in a year or two.. I really love this neighborhood, but we have all outgrown this house. I don't even think there is room for Grunt, Gage and Trinity anymore!! Shaina, yes, Regina filled me in on the conference--she said it was fantastic and she got to meet alot of people too! I hope that we can attend next year, but we will see.. I definitely want you to come visit soon, we are planning Paytons 3rd birthday party, so maybe after that we can plan a visit? That is cool that Adi wore a Paytons Pals shirt!! Rob is printing a bunch of cool shirts and sweats--I will show you when you come by... Tracy, it would be our pleasure to have you and Sky stay down here ANYTIME!! You let us know when you are ready--I am curious how long a drive it is?? I heard you drove all the way to the conference with just you and SKY!!!!!!!!!!!!!!!????????????????? That is AMAZING!! YOu willl have to let me know just how you did that?? Payton is good, he is looking forward to seeing Nemo again on his BIRTHDAY!!! Have a great weekend everybody!!!!

Name:: Michael Murphy
Email:: MurphDog0352@aol.com
Date:: 06/30/03
Time:: 10:41 PM

Comments

Hey Miss Deb,Rob, and Super Trooper, Just checking in on the page,glad to hear everything is good to go. And remember to keep me posted on any events or anything,i missed alot and need to catch up! Oh and i noticed in an earlier entry you neded something from Heron Bay well considering i live here maybe i can help so lemme know. Until then take care and keep kicking a__!! You too little dawg! Take care--Mike Murphy.

Name:: Debbie
Email:
Date:: 07/02/03
Time:: 01:28 AM

Comments

MICHAEL MURPHY!!! How we have missed you!! It is very exciting to have a message from you on the journal after SOOOOOOOOOOOOOOOOO LONG!! I want you to know that there are LOTS of people out there that were thinking of and praying for you while you were in Iraq and we are all VERY thankful that you made it home ALIVE and SAFE!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! Thank you sooo much for being at the benefit too Michael--it is amazing to me that within a couple of hours of your return home that you drove straight to the benefit to be there to support Payton, me, Rob and all of us fighting sma.. YOU ARE ONE AMAZING PERSON. And i know you don't think that but you REALLY ARE!!! WE LOVE YOU MICHAEL!! Don't forget Paytons movie party is coming soon--we have a car wash on the 26th of July at the usual place--a HUGE garage sale at the end of the summer so PLEASE bring me or drop off to Rob all of your junk!!! We will have a weekend long garage sale at the end of August--Then in the fall we are planning a walk/run-details will be along soon--Robs' friends have a golf tournament every year and they decided to donate to Paytons Pals this year.. I have no idea how much they raised but I know there were 40 guys and Rob had a lot of fun golfing that day!:) Any golfers out there?? We are thinking about doing a golf tournament in the future and my boss offered to do the food--Outback Style--:) I will probably have a meeting about the benefit next year just after Christmas but we will begin working on some of the details for the benefit as early as this fall because the sooner we start--the more successful we will be (not to mention more organized etc...) We are currently working on a venue and things will start to roll from there.. We will need a couple of volunteers for the car wash and for the walk so if anyone is interested please let me know by email or phone!! ----I would like to say an extra special thankyou to Renee for her help with the copy machine/scanner/printer!! THAT was AMAZING!! And I would also like to say HAPPY BIRTHDAY TO KIM BROWN!!! Who turned 24 years old today!! You are ever so slowly catching up KIM!!! Hope you had a GREAT birthday!!:) Amy Barnett, it was so great to talk to you--I wish it was under better circumstances--please keep us updated--and please tell Stacey she and her family are in our thoughts at this time--I realized after we hung up that Regina is in New York until this Saturday I am pretty sure...Well, I guess that is it.. We are SUPER excited about Paytons THIRD BIRTHDAY PARTY--This is the first birthday that doesn't feel bittersweet.. I do not know why--& I am usually pretty good at figuring these things out, but whatever--I am just really excited that my baby is turning THREE..:) Love to you all...:)

Name:: Debbie
Email:
Date:: 07/03/03
Time:: 11:36 AM

Comments

Please keep the Haq Family in your prayers-their daughter Mia passed away on July 1st--she had sma type 1/2.... Also, please keep the Linden family in your prayers--they have been regular customers of mine at the Outback for many many years and Catherine Linden (Peters wife) passed away last week due to ovarian cancer. They had been together 21 years....

Name:: Mommy
Email:
Date:: 07/03/03
Time:: 09:20 PM

Comments

Hi! I would like to say thankyou to Ryan AND Jamie AND Reese AND Grand-ma Roz AND Bill AND Uncle David AND Heather AND Russell AND Chace AND Dallas for all the great BIRTHDAY gifts that Payton has received in the mail!!! Nemo is definitely his new favorite movie so the Nemo fish went over very well and we will have fun taking Payton shopping with all of his gift cards too! He is fond of toys r us as they have so many toys that are low that he can look at!! The invitations to Paytons party are going out VERY late (sorry everybody--had a hard time finalizing a time with the movie theater) but, they should be at your homes by Monday or Tuesday (Wed. the latest!!) Let me know if you did not receive yours--and as far as gifts go--any kind of stuffed animal or light weight (very light weight) toy or clothes are good--he is wearing 3T or sometimes 4T--either one is fine... We are REALLY excited about the party and are looking forward to having you all there!!! The shirts that Rob is making for everybody are going to be VERY COOL!!!:) :)

Name:: Debbie
Email:
Date:: 07/04/03
Time:: 01:48 PM

Comments

Happy fourth of July everybody!!! We would like to say a very special HAPPY BIRTHDAY TO RYAN!!!! Hope it is a great birthday Ryan!!! Also Happy Birthday to Josh!! Jason's other half!! Payton will be watching a fireworks show over at grandmas' with the family and daddy of course hosting the show!! I am working:( Oh well, I hope everyone has a FANTASTIC FOURTH OF JULY!! AND BE CAREFUL!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Name:: Wanda Dodaro
Email:: wdodaro@yahoo.com
Date:: 07/05/03
Time:: 07:42 PM

Comments

Hello Deb, Rob and Payton, Wow you guys did great on your fundraiser, Congratulations!!! You guys always do so well and each year it gets bigger and bigger, Way to Go!! Wow, I cannot believe Payton is almost 3 years old, gosh time really does fly! We hope you have a wonderful birthday party for him and we hope Payton gets lots of fun things for his big "3" birthday! Wanda - Mom to Samantha Dodaro (SMA Type 1) 3 1/2 years old tomorrow, you can visit her website at: http://www.our-sma-angels.com/samantha

Name:: Erika Phillips
Email:: kisssohard@yahoo.com
Date:: 07/06/03
Time:: 03:27 AM

Comments

I was so happy to hear from you the other day. I want you to know how much I miss you, Payton and Rob. Its doesnt seem like it has been almost a year since Paytons's Bash at the Movies, but I guess time does fly when you are around. I've been trying to come down there for the past few months, but my life has been in a huge dryer that I havent known which way is up. I will try and call you in the next day or 2, lots to talk about. I miss you and your family and everyone there in Crazyville. :) Is there anything that you need or that Payton would like for his birthday?? Let me know. Miss and Love you, Erika

Name:: debbie
Email:
Date:: 07/07/03
Time:: 12:30 PM

Comments

FIRST, we would like to send a HUGE HAPPY BIRTHDAY TO ASHLEY IN GEORGIA!!!!! We only wish we were able to spend it with you!!!! Hope your day is wonderful and say hi to your mom and Troy for us!! Wanda, I just checked out your website, Samantha looks amazing!! She is SUCH a strong type 1 sma child!! She also happens to be quite beautiful too!! I love her Valentines Day dress! Did she have a great time at her third birthday party?? Please tell her that Payton and his family said HAPPY BIRTHDAY!!!! #3!!!!!! Paytons is next week--we are doing the movie party again--Movies seem to be his favorite thing to do!! We are really looking forward to it-----He will be 3 too!! Erika, it was so great to hear from you on the journal!!!! I was hoping to catch you at home when I called but I figured you are working like crazy!!! When are you planning on coming down??? We have to plan a dinner out or something cool while you are here--maybe with Michael Murphy too!!! We can get the whole gang together for some catch up!!! Let me know when you know and we'll plan something ahead of time!! Well, I hope all is well for everyone out there--we took Payton to see Sinbad yesterday and he LOVED it--there is a ton of action in that movie and Payton is ALL about action, so it was a good experience for him.. We always are not sure when trying out new movies--esp. ones that are NOT pixar--but he did great and we will definitely be going back to that one in the future... Please RSVP shirt sizes of everyone that will be attending the party next week so that Rob can do one for everyone!! He will be making them for the adults too--so make sure you let me know sizes when you call!! We are really excited about the party and Payton is getting excited too!! We ask him if he wants to have a party for his birthday and he says "Ehh!!!" That means a big YES! Take care out there!! & See you soon.

Name:: Jennifer Palmese
Email:: jp954@hotmail.com
Date:: 07/08/03
Time:: 01:14 PM

Comments

Hey Debbie- it's Jennifer. Rodd and I recieved your invitation for Paytons birthday and you can count on us to be there. I will take a small shirt and Rodd should be okay with a Large or XLarge. I still have pins to return to you and some money not much. I didn't sell too many pins and I am not sure how my mom did at her Outback but I will get everything from her and bring it on Sunday. What other characters does Payton like? I gotta get him something cute. I love shopping for kids. Well I will talk to you later. I would love to volunteer at the car wash but unfortunately I have to work from 10-2 that day. I will tell Rodd to bring our cars by if he isnt working. Well look forward to seeing everyone on Sunday. BYE BYE Jennifer

Name:: Debbie
Email:
Date:: 07/09/03
Time:: 11:58 AM

Comments

Hi Jenn!!!!!!!!! We are looking forward to seeing you guys there!! Payton is super excited as he knows we are having a party for him soon!! Very cute!! There are a ton of birthdays--babyshowers--weddings, etc.. coming up this summer so we will keep you updated!!! See you all on Sunday!!

Name:: TONY DIAZ
Email:: ADiaz@ssr-inc.com
Date:: 07/09/03
Time:: 04:00 PM

Comments

I wasn't sure but are you still taking clothes donations for the garage sale? if so my mother has 2 bags full that she was going to give to goodwill but i told her to hold off because i would rather give them to you. when is the car wash? I would definately go out and wash some cars but I have Victoria every other weekend so if it's on a weekend I do not have her i'll galdly help. Send me an e-mail and let me know and i'll bring the clothes to you since my mom lives 2 minutes away from you and let me know the car wash date.

Name:: Debbie
Email:
Date:: 07/10/03
Time:: 10:47 AM

Comments

Hi Tony!! Yes, yes, yes!!!!!!!!!!!!!!!!! Please go ahead and drop off to me anytime at home!! The car wash is not this weekend but NEXT!! SOO, if you can come, give me a buzz and I will give you directions to the station!!! If anyone would like to volunteer or come get their car washed that day go ahead and call me or email me and I will give you directions to the station--mobil on Atlantic and C.S.Drive.. We will probably do a couple car washes this summer since the weather is so "car wash friendly" and probably skip them during the school year--take care everyone!! See you on Sunday!!:)

Name:: MJ
Email:: TWEETYROLL88@aol.com
Date:: 07/12/03
Time:: 11:35 PM

Comments

Happy Birthday Payton!!!! Everyone who sees your picture pin (which is still on my chair) thinks you are too cute!!! I had the pin with me at the hospital and my shirt with your picture on it too. Happy Birthday! I hope you have a great time and get lots of cool things. I loved Finding Nemo too, my bandages were finding nemo characters!!!! I had them all over my belly!! I'll be thinking of you and am going to make a cake tomorrow and will eat it and celebrate with you!!! HAPPY BIRTHDAY TO PAYTON!!!! Way to go!!! Love you bunches and bunches, MJ www.caringbridge.org/ny/mjpurk

Name:: Jen B
Email:
Date:: 07/13/03
Time:: 02:01 AM

Comments

Hey Buddy!!! Happy Happy Birthday!!!! I cant believe that you are three!!!!!! See you later :) xoxoxoxoxoxoxoxoxoxoxoxo Jen

Name:: Talia Solomon
Email:: ltjgal555@hotmail.com
Date:: 07/13/03
Time:: 01:20 PM

Comments

Hey Payton! Happy Birthday big guy! Sorry I couldn't make it to your big bash! I hope you had a ton of fun! I wish I would be there I had to work! Happy Birthday and I wish you many more to come. All my love Talia

Name:: Marty Offenther
Email:: Promomarty@aol.com
Date:: 07/13/03
Time:: 07:06 PM

Comments

Payton, as you enter year number 3 you have shown remarkable strength and determination with a "little" help from your family and surrounding friends you've certainly lived up your name: Super Trooper ..may you have a great time on this special occasion and each day after ... Marty & Shelley Offenther

Name:: Madison Reed
Email:
Date:: 07/13/03
Time:: 10:52 PM

Comments

Hey Payton hope your 3rd birthday is great. Have a great time Finding Nemo - I saw it and it was good. However my favorite summer movie was The Lizzie McGuire Movie - saw it 6xs the music is great. Anyway make sure you get a taste of the cake and ice cream - but not tooo much. Hey you all can do a big favor - we need you to vote for the following band O.A.R - on mtv.com or go to thier site www.ofarevolution.com and follow the direction to vote for thEIr song Hey Girl --- last month I contacted these guys to help us raise awareness about SMA and they said yes - we are getting them info and shirts etc. The more votes they get they win a trip to mtv to sing the song. Oh they may be coming to you town. They are coming to columbus on Sept 5. THANKS AND HAPPY BIRTHDAY PAYTON - LOVE YOUR FRIEND MADISON ROSE REED 6 YEARS OLD - SMA 1

Name:: shaina
Email:: shaina@ourshootingstar.com
Date:: 07/14/03
Time:: 11:49 AM

Comments

happy happy birthday payton. we had such a nice time at your birthday bash yesterday. you are such an amazing little guy and we love you so much! love, shaina, adi, jordan and jacob (in spirit).

Name:: shaina
Email:: shaina@ourshootingstar.com
Date:: 07/14/03
Time:: 11:55 AM

Comments

happy happy birthday payton. we had such a nice time at your birthday bash yesterday. you are such an amazing little guy and we love you so much! love, shaina, adi, jordan and jacob (in spirit).

Name:: Reese Withey
Email:: RyJam282@cs.com
Date:: 07/14/03
Time:: 02:01 PM

Comments

Happy Birthday cousin Payton. I love you and had a great time at your birthday party yesterday! I hope you have a great day. Mommy and Daddy also said Happy Birthday and they love you too. Hope to see you soon. I love you, Reese

Name:: Aunt Holli and Cousinf
Email:
Date:: 07/14/03
Time:: 03:41 PM

Comments

Name:: Aunt Holli/Cousin Ashley
Email:
Date:: 07/14/03
Time:: 03:50 PM

Comments

Happy, Happy, Happy Birthday Payton!!! Wish we could have made your big birthday bash. You are getting to be such a big boy now. I have been trying to call you all day - you must be out and about. Cousin Ashley tried to call you too - I hope she reached you. She said the nurse answered this morning. O'well just so you know that we are thinking of you on your special day. I hope you like the Buzz Lightyear that blows bubbles. Ashley is going to send you something extra when she gets home in August. We love you, your very special to us and we wish we could see you more often. Aunt Holli, Cousin Ashley and Troy

Name:: Frankie & Claudia
Email:: Frank33063@hotmail.com
Date:: 07/14/03
Time:: 06:23 PM

Comments

Hey guy's how are you ?? We are good, still getting settled, little by little. We had no idea about the party being this past weekend. I'm sorry we missed it, I can read that is was just great.... I'm happy Payton had fun..... I called Rob and left a message on his cell,on Thurs. But you know how that goes.....That thing must ring like crazy. Unfortunatley he did not call me back. :( , So we did not know about it. Anyway, glad you had fun. My cell # has not changed, but the new house # is (561) 752-0669 just like an older Coral Springs # right ?? I hope Payton is feeling well, and last but not least... HAPPY Belated B-DAY !!!Payton. Love , Frankie, Claudia and Melyssa. : )

Name:: Debbie
Email:
Date:: 07/14/03
Time:: 09:53 PM

Comments

HAPPY BIRTHDAY DEAR PAYTON--HAPPY BIRTHDAY TO YOU!!!!! What a great couple of days!! I want to thank all of you that have left birthday wishes on the website and those of you that came to Paytons' movie bash (it was a great party!!) and also those that have sent gifts and cards for Paytons big THREE!!! He really did have a great party and then today we went to CHUCKIE CHEESE where we celebrated Hayden Mawhinneys birthday TOO because he was born on the SAME DAY in 1999!!! Payton LOVED the bear/rat/mouse whatever Chuckie is and waited for him to come out each time and sing to us!!! He is now exhausted after a weekend of craziness so I will write more later!!!!!!!!!!!!!!!! LOVE TO YOU ALL!!!!! Happy birthday my beautiful little man--mommy and daddy love you more than anything in the entire world!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Name:: Debbie
Email:
Date:: 07/16/03
Time:: 11:56 AM

Comments

Hi everybody!! Things have finally calmed down a bit around here! I think Payton has recovered from his crazy weekend!! He had such a good time at his movie party and he seems to LOVE Finding Nemo!! Payton has seen it at least four times now. The movie party is definitely the way to go for Payton! I would like to wish Nikki Deese a VERY happy birthday (she turned 20 yesterday!)from all of us in the Freeman clan and everybody at Paytons Pals too!! Hope your birthday was great! We will be attending Regina and Jims first annual "Ryans Hope" event at Markham Park on August 16th!! Regina is sending out invitations soon and if you are interested in attending please let me know asap!!!! We will be holding a car wash on the 26th of July--that is not this weekend but next!!! If you can come out and wash cars--that would be FABULOUS!! And if you can come and get your car washed--that would be FABULOUS TOO!! We will definitely get some SUN at this one and we start about 9am & finish at 1pm!! We are also planning our annual Garage sale for the 23rd of August! That is a Saturday and you can drop your stuff to me at the house or to Rob at the shop ANY TIME over the next few weeks!!!! THANK YOU EVERYBODY for helping us with all of our efforts!! We will continue to give to the University of Miami Genetics Lab & SMA testing Projects/FSMA(research dollars!)/and families that are in need!! We have to date, raised over $160,000!!!!!!!!!!!!!!! for sma!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! We need a lot more but we will continue to work our BUTTS off raising money and SPREADING AWARENESS about this disease!!! THANK YOU to all of you individually for your personal efforts to make this happen because if it were not for all of you--doing what you do to help--it would just be a dream. INSTEAD, we WILL see a cure for this disgusting disease. Love to you all..

Name:: Erika Phillips
Email:: kisssohard@yahoo.com
Date:: 07/17/03
Time:: 02:12 PM

Comments

HUGE HUGS AND KISSES TO PAYTON!! Im sorry I missed your birthday big guy!! I hope you had a fantastic birthday! Im so proud of how strong you are!!! I can hardly wait to see you. :) Much love to you Deb and Rob. It sounds like the two of you are trucking along. I miss you guys so much. I hope to get to see you in August. Hopefully we will actually get to talk on the phone instead of playing tag. haha. Hope all is well with everyone. I love you!! Love, Erika

Name:: Gabriel Cox
Email:: gmcox75@msn.com
Date:: 07/18/03
Time:: 05:06 PM

Comments

Happy belated birthday Payton! I hope you had a good time at your party. Nemo is very cool. Take care. Gabe

Name:: Jennifer and Gabe
Email:: gmcox75@msn.com
Date:: 07/18/03
Time:: 08:43 PM

Comments

Happy Birthday Payton. We have a present for you and will bring it soon. We love you and miss you. Jennifer and Gabe

Name:: Debbie
Email:
Date:: 07/19/03
Time:: 12:15 AM

Comments

Hi ERIKA!! & Jenn and Gabe too!! Thank you for Paytons birthday wishes!! He really had a great birthday!!! NUMBER THREE!!!!!!!!!!!!!!!!!!!!!! No doc thought Payton would survive this long (the only one that would actually say a "time" said around 7-8 months) I think that he is a real "survivor" and he has taught EVERYONE that has met him--lessons in life. He is an amazing little boy and NOT because he came from me & Rob but because he is "Stronger" than we ever were or ever will be--he is tough mentally and physically because he is still ALIVE and with his physical state and his complete physical compromise--the odds have been AGAINST him for a LONG time. In case you don't know--Payton is unable to swallow.. He cannot eat with his mouth. He must eat each day through a tube that continuously pumps food into his stomach.. He must get suctioned and gets help breathing with a bipap.. He is made to cough with a machine to keep his lungs clear and free of infection.. He cannot lift his head AT ALL.. THere- fore he must lie down with his head to the side ALL THE TIME.. For THREE years he has had to lie on the side of his face ALL DAY LONG.. Mentally Payton is 100% and yet he cannot speak to us because he doesn't have the STRENGTH to utter ONE WORD.. If he had more strength he would go on and on and on but instead he makes noises because he is just plain not strong enough to manipulate a word with a breath.. It is all he can do to just take the breath.. My point is that these are some pretty LARGE obstacles to deal with and he is just a little boy--and was just an INFANT and he dealt with these things like NO BIG DEAL.. Sometimes I get annoyed by stupid things and then I think about Payton and how amazing he is and I HAVE NO COMPLAINTS.. NOT A ONE.. LOVE to you ALL.. Don't forget about the car wash--NEXT SATURDAY!!!

Name:: Debbie
Email:
Date:: 07/19/03
Time:: 12:25 AM

Comments

oopps!!! Almost forgot!! We wanted to wish my SISTER AMY A VERY HAPPY BIRTHDAY!!!!!!!!!!!!!!!!!!!!!! SHe turned 28 yesterday!!!!!! Hope the Mai-kai was a blast and we LOVE YOU VERY MUCH!!!!!!!!!!!!!!!!!!

Name:: Debbie
Email:
Date:: 07/22/03
Time:: 12:46 AM

Comments

Hi out there!!!!!!!!!!!!!!! Hope all is well with our sma family/family/& friends!!!!!!!!!!!!!!! We are very excited to be having our 5th car wash this weekend!!! We are planning on doing two car washes a year, and this is our second for the year--so we will not do another one til next summer!! We find that summer time is the best time to do them!! The car wash is at the "usual" spot and if you can come by and help out for a bit we would be super grateful and if you want to get your car washed that would FABULOUS TOO!!!! We will be there from 9am to 1pm so SEE YOU THERE!!!!!!!!!!!!!!!!!!!!!:) Also, we are having our ANNUAL garage sale on the 23rd of August so if you have any garage sale type stuff that you would like to donate, please bring it to me at home or at the OUtback or to RObs shop!! THANK YOU!!!! I may go around at some point and pick some things up that need to be picked up so if you need "pick up" then just let me know and I will get by asap.. Payton is doing good--we took him to Super Target yesterday and he seemed esp. wowed by the gift wrap aisles and the TOY aisle--they were the most colorful and the most "cool!" We had a fun trip:) Well, I think that is it for now--have a great night everyone:)

Name:: Sandy Clark
Email:: clalands@pldi.net
Date:: 07/23/03
Time:: 09:28 PM

Comments

What an amazing site you have for Payton. Your family is such an inspiration to all the newly diagnosed families and certainly to mine, Saria lived only to be 18 months of age, but FSMA was the reason for that. No other child in northwest Oklahoma had ever been diagnosed before Saria and no one knew quite what to do. through our friends in SMA we had our precious little angel much longer than expected. Thank you again for sharing your story, hugs to Payton, http://www.geocities.com/sarias_place/index.html

Name:: Sandy Clark
Email:: ConstanceRearick@aol.com
Date:: 07/23/03
Time:: 10:10 PM

Comments

Debbie, I just spent all evening reading through your journal. You are a very amazing young woman. I was reading your entire journal for the first time and I must say all your entries touched my heart. The mentioning of all the little angels passing means a lot to me, there were so many that passed after Saria did in December. Keep up the good work. This is a site I will be returning to very often.

Name:: Debbie
Email:
Date:: 07/24/03
Time:: 06:01 PM

Comments

Hi Out There... Hi Sandy--Thankyou so much for your thoughts and kind words and for reading the site--I had gone to your website after I read about Saria on the FSMA website back in December--SHE IS SO CUTE--We will definitely have to keep in touch and share thoughts one day--I will email you and get your # & address... This disease is just as bad as it gets... I often think about all the things that I am thankful for, but Payton and the kids that suffer from sma like him, have gotten A RAW DEAL... If you must take them young and not let them live, WHY TAKE AWAY ALL OF THEIR ABILITIES. I don't get it... I have seen lots of bad things in my life but this takes the cake. TO say the least... Payton is in need of more caloric intake and we are working hard to get FOOD INTO HIM!! It is such a difficult task to deal with because he is a belly breather--and is not trached--so therefore during the day when he is off bi-pap is literally a HUGE challenge for him to eat and digest AND breathe... During the night it is not so hard, but day time is not easy.. ANd he pretty much needs to be getting nutrition around the CLOCK!! Also not easy--BUT we are making it happen as best we can--he is SOOOOOOOOOOOOOOOOO on the weak side of type 1 and has the hardest time keeping up with weight esp. as he continues to grow in length... Well, keep your fingers crossed, this has become a real issue... We are excited for Sat-- I look forward to seeing everybody this weekend and PLEASE!!!Drop off all your garage sale stuff soon!!! We are having the garage sale August 23rd and we decided to have the garage sale every August because August is sma awareness month!! I won't be collecting any garage sale stuff until next July--so clean out those closets!!!!!!!!!!!!!!!!!!!!!!!! LOVE---DEB

Name:: Debbie
Email:
Date:: 07/26/03
Time:: 04:09 PM

Comments

FIRST OFF, I want to say a HUGE CONGRATULATIONS to the Rappoport family that are now expecting an SMA FREE baby boy in February of 2004!! It is unimaginable the amount of pain involved in losing a child and they are finally able to feel an ounce of joy after suffering such a great loss!! I only wish the same happiness for all sma families!! MAYBE we can also find a CURE and save so many children from losing their battles and ultimately their LIFE... Our car wash was rained out today:) super bummer--HOWEVER, I would like to say a SUPER HUGE THANKYOU to SSR, Tony Diaz and the wonderful people that work with him!!! They all raised over $100 just for our car wash at one of their luncheons and thanks to them, Brian Speiwak (a lovely busboy at my work) and my mom, we were able to raise $140!! And we did not wash ONE car!! I guess we did ok then!!:) We will reschedule and when I have the date I will let everyone know, but for now, we are planning the garage sale for the 23rd and I need all your junk so please get it to me or Rob over the next couple of weeks!!!:) I must go because we have a busy weekend but I will be back soon!! Love to everyone and please have a safe trip Amy!! You and Brian will be in our thoughts as you travel across the country to CALIFORNIA!!!!!!:)

Name:: Debbie
Email:
Date:: 07/29/03
Time:: 11:50 PM

Comments

Hello out there! We have been away this weekend--we had a very nice relaxing couple of days at the beach with Payton--no phones, no computer--it was very much needed and we are feeling a lot less stressed.. Payton has already shown signs of improvement from the new diet and new diet schedule--hopefully things will continue to improve.. THANK YOU EVERYBODY for all that you do to help us with all of this--it gets crazy for us, I am sure it gets crazy for you too--LOVE to you all.

Name:: Meghan Vesey
Email:: mrosevesey@icqmail.com
Date:: 07/30/03
Time:: 11:39 AM

Comments

Hey Debbie, Just a little hello from Maryland. I have been trying to read your journal as often as possible. Congrats on raising $140 without even washing one car. Just to let you know, I will not be attending school in the fall, (well except for 7th period) because I am going to college in January, but to the point, anyways, I want to help you out as often as possible. I get home from Maryland Aug 23, and don't hesistate to give me a call for anything. I hope you vacation is awesome. Lots of Love, Meg

Name:: Erika
Email:: kisssohard@yahoo.com
Date:: 07/30/03
Time:: 04:04 PM

Comments

hey deb, rob and payton! just wanna say hi and see how you are doing. deb, will you email me your home address so that i can send you some pictures? i would really appreciate it. hope the new diet works for payton and he can get his calories and nutrients. All my love, Erika

Name:: Talia
Email:: ltjgal555@hotmail.com
Date:: 07/31/03
Time:: 01:27 PM

Comments

Hey Guys! I tried calling a few times you must be really busy! I hope everything is great! And I still wanna see my super trooper! I'm very excited to hear that hes doing so well. I LOVE YOU ALL! And I miss you Payton! I hope you had a great time at the beach, you little beach bum! hahaha Hope to see you and hear from you soon. -Talia

Name:: Doug
Email:: doug_park2001@yahoo.com
Date:: 08/01/03
Time:: 11:12 AM

Comments

Hi there Payton, You were on my mind when I woke up this morning. I wondered how you were doing. I see from the recent entries that you've been on a new diet and have been to the BEACH!!! I live in a place where there are no beaches, and even though home is home, I wish there were real beaches here with dolphins and manatees instead of big muddy holes with a few bass and bream. Anyway, I hope that you are feeling well. I wasn't sure if my telepathic "Hello" reached you, so I thought I'd just write in. Take care and God bless you.

Name:: Doug
Email:: doug_park2001@yahoo.com
Date:: 08/01/03
Time:: 11:16 AM

Comments

Name:: Debbie
Email:
Date:: 08/03/03
Time:: 08:19 PM

Comments

Hi out there!! Hi Megan (I emailed you) and Erika!! and Doug!!! THANKYOU for writing!!!! I love hearing from everybody!! I want to say THANKYOU TO GRANDMA ROZ for helping us to start redecorating Paytons' room--he is pretty much over the whole baby theme and Looney Tunes room--so we are re-doing his whole room in the disney theme--with ALL of his favorite characters etc.!! It should be pretty neat when we are done!! We have several lithographs that I am going to have framed and he is getting a mickey mouse TV!!! Payton has already put on some weight--thank goodness and looks a hundred times better just with the little weight that he has put on so far--I am really hoping that we are able to put at least 5 pounds on him before the end of the year--WISH US LUCK!!!!!!!!!!!!!!!! THat is a LOT for Payton!!! We had wonderful visit from cousin Reese today with Uncle Ryan and Aunt Jamie & Grandma Roz--Reese is getting SOO BIG!! & She is SOOOOOOOOOOOOOOOO CUTE!!!!! What an amazing smile on this kid! I must get some things done but I will be back soon---:)

Name:: Gary
Email:: Gary@Ikescarterpools.com
Date:: 08/04/03
Time:: 04:34 PM

Comments

Debbie,rob,and of Course payton, SURPRISE,SUPRISE,SURPEISE! I do have a computer,just had a rare moment to catch up on the web page. WOW! YOU ARE A BUSY WOMEN DEBBIE, reminder we will have a ton of ----, I mean fine products of all interest after kyle's B-Day I will need robert's truck, I am sure, so please plan on it, and as you Know Marlee is leaving town for Canada so we could sell all of her stuff. HA Ha I was happy to be a part of the very brief R and R session that you and Rob had. Let me know when we can do it again.. see you Sunday Love Gary

Name:: Aunt Holli
Email:
Date:: 08/06/03
Time:: 12:13 PM

Comments

Hey Payton and Debbie, I am getting the box of yard sale items ready to send. I hope you raise lots of money this year. That is really cool that Payton is getting is room re-done. He must be looking forward to his big boy bed. Are there any DVDs he needs? We'll send him one for the new TV? Deb, do you have another pair of sweat pants in a medium? Can you send them? Let me know, and I'll put a check in the mail. Oh yeah Rob was going to send Ashely a T-shirt from Payton's party too. If you send the pants you can put them together. Have a good week, and I'll talk to you soon. Holli

Name:: Debbie
Email:
Date:: 08/06/03
Time:: 07:08 PM

Comments

Hey Gary and Holli!!! I am really looking forward to the garage sale!! It is one of the most physical events we have--we basically feel like we work for a furniture moving company for the weekend--but it is definitely one of the most FUN!! Gary, we will definitely see you this weekend and will bring the BIG truck!! We are looking forward to Kyle's FOURTH BIRTHDAY!! We also had a great time celebrating Marlee's birthday at buca de pepo (sp?) last weekend--that place was great--the food was DELICIOUS!!! Holli, thank you so much for going out of your way and shipping all that stuff to Fla. for our yard sale!! We totally appreciate it!! I finally JUST got the pants/shirts etc.. from Rob, SOOOO if anyone would like a pair of sweats that say Paytons Pals (they are the cool sweats that you can wear to the mall etc.. and they are Very comfortable and stylish too!!) they are $20 and I have 4 pairs of dark gray--3 small/medium and 1 large, I have 7 pairs of light blue--4 small/medium (these are like mediums) and 3 smalls...(the smalls are SMALL) , I have 3 pairs of black--they are all small/medium... If you are interested in any of these (i also have cool t-shirts for girls--these are not reg. t-shirts--that are $10--these I have one in pink (large), one in orange (medium/small), one in turquoise (medium/small) and one in lavender (medium/small) LET ME KNOW ASAP!!! I will send them out to you!!! THANKS!!!!!!!!!!!!!!!!!!!! WELL-----TODAY WAS a WONDERFUL DAY!!! We took Payton down to UM and presented their Dept. of Pediatrics and Genetics with a check for $50,000!!!! It was very exciting to be working with them so closely on a treatment (or things that will lead to such) for SMA!!!! If anyone is interested in the exact details of what we funded for them, please let me know and I will get more detailed.. Lots of sma jargin.. BUT, we are going to have an "SMA DAY" at UM in July of 2004 where we will be able to use the machine that we purchased for UM to test the public for sma carrier status, smn 2 copies, etc... WOW!!!!! This lab will be one of only a few in the country that can now test for sma carrier status and diagnose sma... They had TWO new stations there (channnel 10 and channel 4) and WIOD to do interviews and take pics--they also said there should be a brief in the sun-sentinel about the donation in addition to a brief in the miami herald!! THey presented us with a UM plaque (it had the orange and green colors of course!!) and served us lunch and said a few words, etc.. We spoke to the heads of the dept. pediatrics and dept. of genetics and got valuable information on how to further our "spreading awareness" mission!!! UM knows that we mean business--now it's time for south florida to know--next the country!!! WE NEED A TREATMENT FOR SMA-------FEEL FREE TO HELP US IN ANY WAY!!!!! EACH OF YOUR INDIVIDUAL COMMITMENTS IS WHAT GOT US THIS FAR!!!! SOOOOOOOOOOOOOO THANKS GUYS!! WE ARE GETTING SO CLOSE!!!!!!!!!! Our garage sale is the 23rd so if you have not cleaned out the closet yet, please get on it!!! We need your junk and SOON!!!! We will not be having another yard sale until next year!!! After the garage sale, we will be working on aspects of next years' fundraiser so there will not be any events for Paytons Pals run by us until the summer benefit next year!! If anyone has any IDEAS for us or knows of any other events that we can go check out and GET IDEAS please let us know!! ALSO, if you would like to know how you can help at the benefit next year, or what to do if you want to donate goods or services, please call me at home!! EMAIL me if you don't have my phone number!!!! Payton has gained weight--he looks fantastic already so I am hoping he really looks like AMAZING in a month or two--he had trouble handling all the extra food the first two weeks, but it looks like he has gained some strength and is doing better--Our thank yous are going out soon for the benefit--I hope everyone likes the pic--it is from Paytons 3rd birthday--I guess that is it--I would like to say thankyou to those that made it to the check presentation today--it is so hard to do anything mid week in the middle of the day and I really appreciate you being there and also thankyou to UM, Alison Plummer, Dr. Baumbach, Elicia Estrella (GOOD LUCK WITH EVERYTHING ELICIA!!), Mary Ellen, Marsha, Catherine, Dr. Elsas, Dr. Howell and everyone else that made this day so wonderful and helped to make it happen!!! ALSO, thankyou to Channel 10, channel 4, WIOD 610 am radio, The sentinel, the herald, and AMBER for making our news KNOWN!!!!! We love all you guys but MOST of all, those that have been there for us, rooting us on, from day one, fighting sma with us!! YOU ARE THE BEST FRIENDS AND FAMILY WE COULD HAVE EVER PRAYED FOR!!!!!!!!!!!!! Love to you all--The Freemans--deb, rob, payton, grunt, gage and trinity and our newest editions--hermit crab #1 and hermit crab #2--we are still working on names for these animals!!(bday gifts to Payton!)

Name:: Aunt Holli
Email:
Date:: 08/07/03
Time:: 11:17 AM

Comments

Hi Debbie, That is great news to hear about UM. Keep up the good work - that is really AWESOME. I have ALOT of junk to send for the yard sale. Should I send it to the house or Striptees? I will take a pair of black pants in M. If you are already out of the black ones I'll take any color. Let me know, and I'll put the check in the mail. Can you send some recent pics of Payton too. We would love to see how big he is getting, and how handsome he looks. Time flys doesn't it. Ashley is about to start 4th grade. That is the grade we were in when we met. Anyway, I am shipping the box on Monday so let me know where to, and about the pants. Holli

Name:: Debbie
Email:
Date:: 08/07/03
Time:: 12:35 PM

Comments

Hey Holli! Yes, definitely send it to Striptees--Rob has been bringing stuff to storage from the shop--Thankyou!--I will send you a pair of the black mediums & Ashley's shirt together & a couple pics too!! MJ, I just sent you some tees from Paytons bday--I hope you got them!! We were in the sentinel today in the brief column in the local section if anyone gets the paper!! I don't know if we were on the news yesterday since we got home so late, but we will be watching tonight just in case--Love to you all!! Deb

Name:: Debbie
Email:
Date:: 08/08/03
Time:: 11:14 AM

Comments

Happy 5th Anniversary to Jenn & Rick Prekaiski!!!! Is #5 like a silver or pearl anniversary or something??:) Well, you both are wonderful and we hope you have a wonderful 50 more!!! We have a busy weekend but I will write soon--did anyone happen to catch us on Channel 4?? I am wondering if that aired because I haven't heard anything about it?? I heard we were seen or heard on all of the other media outlets that were there that day except for Channel 4--have a great weekend everyone!!

Name:: Michael Murphy
Email:: MurphDog0352@aol.com
Date:: 08/08/03
Time:: 06:06 PM

Comments

Miss Deb,Rob,and Super Trooper and all the animals at the Freeman Zoo,just stopping in to say hello and say that you guys are unbelievable.You are a voice for all the children AND parents that feel helpless b/c of this awful disease. You guys motivate me beyond all belief.You guys really do rule, all the work and effort you put in and you never ask for anything in return.Keep on fighting and only good things are to come out of it.Awesome job, and remember if you guys EVER need anything let me know, i am now officially on vacation status so basically im being a bum. So just lemme know. Once again thanks for being the embodiment of parents.Take care. Michael Murphy

Name:: MJ
Email:: TWEETYROLL88@aol.com
Date:: 08/10/03
Time:: 11:10 PM

Comments

Howdy my buddy Payton (and Deb & Rob too), How ya bean? LOL I got my t-shirt from your birthday party! Thanks sooooooooooo much. It's awesome! My dad and Brenda say thanks too! Hope you are having an awesome summer. Oh, don't worry if you don't hear from me for awhile. I'm going to be computer-less for awhile :-/. I'll be sending you cards soon! Love ya, MJ

Name:: Debbie
Email:
Date:: 08/12/03
Time:: 12:00 PM

Comments

Hello out there!! THANK YOU MICHAEL!!! We think you are pretty darn cool too--we are very lucky to have such good people so close to us.. I explained to the UM heads that it is NOT easy to continue to "share" our lives and the obstacles, and most importantly, Payton, with the world, but we realize that it is CRUCIAL that we do. Otherwise everything I have been yelling about for 3 years is just wasted.. People need to SEE it. People need to see Payton and kids like him, for it to really sink in what is going on here.. It takes just a little bit of help from everyone to make a BIG impact, a HUGE difference.. We will find a cure/treatment for sma very soon with so many people chipping in to make it happen!! I have heard that there is an FDA approved drug out there that may be suitable for drug trials for sma children--this is all preliminary stuff I am hearing so I will have more details later.. Payton has definitely put on some weight and he looks GREAT!! He really does--I am going to try and take pics with him at the mall very soon!! A couple of customers saw us on TV presenting the check to UM--it is VERY Exciting to know just how much we are spreading the word down here in south florida!! I am hoping our "sma day" in August is a HUGE affair!! I would like to say Thankyou to Kelly Nobles--soon to be Eason!!!! for your recent generous donation!! Also, thank you to my mom for watching Payton during this crazy weekend!! CONGRATULATION to Tamara & Rafe & Madison on your nuptials on Saturday!! The wedding was beautiful and even the rain did not ruin anything--it was actually even more sweet in the rain with you two holding an umbrella--Your love is so obviously genuine and you both are so happy and comfortable with each other--it is so nice and peaceful to see you together as a family and as husband and wife--you will have MANY years together and you deserve it!!! We had a great time getting out and going to the wedding--it was overlooking the intracoastal--and the reception--on the beach. We also celebrated Kyle Kaplan's 4th birthday on Sunday!! HAPPY BIRTHDAY KYLE!!It was a great "hulk" party and with the hurricane that was going on--we were unfortunately unable to bring Payton to the party--it was straight from there to work for me.. Oh, also we celebrated with Mary Bogus--soon to be Pederson--at her Baby shower on Saturday and we also want to congratulate her and Peder on their engagement that morning!!! Mary, your heart shaped diamond was absolutely gorgeous and I am sure you are just elated--you looked beautiful at the babyshower--very happy and at ease--we wish a ton of luck in the future with everything and esp. with Mackenzie!!! Ps.. Do you have any food left over from the shower?? There was a TON OF FOOD there!!!! :) ALSO---One more thing, HAPPY 4th BIRTHDAY also to Taylor Bogus!! Her birthday party was on Sat. morning, where daddy proposed to mommy!!!! ok, think that is it--be back soon!! OH... ALSO, happy 18th BIRTHDAY TO TALIA SOLOMON!!!!!! Love you, Love you all, Talk soon!!

Name:: Debbie
Email:
Date:: 08/16/03
Time:: 10:06 PM

Comments

WOW!! What a day--I just came back from an 80's concert with ROb--called "beer, bands and babes"--I mean come on, babes?? I wish I had a video cam so I could show you guys just how ridiculous--there was a woman spinning around a stripper pole (there were many of these little set ups) that was older than my mom and just completely not in shape and you really just feel bad for these people--girls in g-strings with pimples all over them and I mean oh God it was just GROSS--I have really just about had my fill of these has been rock concerts but I think Rob has enough juice in him for at least a couple more---I am not sure what it is--the cigarette smoke, the drunks, the "80's Style" fashion bug, the rude people that stare, bump into you, sweat and spit and basic just disgust, but whatever it is, I just don't feel that we fit in. HMMMM>>>>> Please tell me I am NOT a priss, but if that makes me one, OH WELL.. I just can't do the 80's concert thing anymore.. :) Maybe Kelly Clarkson will be in concert soon???? THANK YOU MOM FOR WATCHING Payton while we went--it was a least a break for us to get out.. We had a wonderful time at Regina's first event for Ryans Hope.. It was a beautiful day and everybody had a lot of fun.. I think that everyone got to really reflect and think about Ryan and how wonderful he was and how much he deserved to live... We are having our yearly GARAGE SALE next weekend, so if you haven't already.. CLEAN OUT THOSE CLOSETS!!!!! I have finally done mine and I came up with a ton of stuff!!! THANK YOU TO ALL OF YOU THAT HELP US WITH THIS!!! If anyone needs me to come by and pick anything up, just email me or give me a buzz!!! I think I missed this, BUT, we want to wish a HUGE HAPPY BIRTHDAY TO JEN BERMAN!!! Who just turned 19 and to NANCY PAZ too, who shares the same b-day!! I will keep your age to myself Nance!!:) I hope that some of you are able to go by Jen B's house tomorrow for their celebration for Jen's b-day!! There will be jet-skiing and all kind of FUN!!! Bring your suit!!!! ALSO, Happy birthday to JACKIE MAILHE who had her b-day on the 13th--how old are you Jack?? 22??? 23??? Time is FLYING!!!!!!!!!!!!!!!!!!!! Well, we love all of you guys and I want to say a very special thank you to those of my friends that supported Regina and her family today--Kelly & Matt and Max, Lori & Brody, Tamara & Rafe & Madison, Jen B, & Talia---YOU GUYS ARE AMAZING.. You are ALWAYS there for me, Payton, Saving these children period.. You don't even realize how amazing you are, but I feel very lucky to have you as my FRIENDS!!!! LOVE LOVE LOVE---Deb PS>> Good luck to Amy and Brian in their new home in Berkeley, California!!!!!!:)

Name:: Debbie
Email:
Date:: 08/17/03
Time:: 07:10 PM

Comments

HI--Me again.. I want to thank Jeff and Robin for inviting me to Jens' bday party today--what an AWESOME day--Jetskiing, food, fun, swimming, pinatas, the whole deal--I had such a good time.. Can't wait to do it again.. I want to say THANK YOU SO MUCH to Rita Starr and Larry and Bruce and everyone else involved with the amazing event "the Great Eskate!!" This is a roller blading event that Rob does the t-shirts for and they donated a THOUSAND DOLLAR CHECK to Paytons Pals!!! They are a big contributor to FSMA and they also gave a $1000 check to Regina's Foundation in honor Ryan--you are amazing and what you accomplish with that roller blading event is quite impressive.. There should be 500 people this year, which is HUGE!! We really appreciate you involving our organization in your efforts to eradicate spinal muscular atrophy and thank you so much for all the hard VOLUNTEER work that you do!!!! Payton LOOKS AMAZING--I can't wait to get pics up of him--I am taking him to the mall soon to get professional pics done and you all are going to be very surprised!! He really just has filled out so much from the new feeding schedule! IF we had only known sooner?!! Well, I promise to get that done soon--don't forget about the garage sale stuff... AND HAVE A GREAT REST OF THE WEEKEND!!!!!!!!!!!!!!!!!!!!!!Love the Freemans:)

Name:: Debbie Sackett
Email:: skulntaz@bellsouth.net
Date:: 08/20/03
Time:: 10:07 AM

Comments

Debbie, I visit the website to keep up on how Payton is doing. I cant believe he is three already! You and Rob are wonderful parents. Hes lucky to have both of you. This site is great, you guys did a great job. Next time we are in town Ill call. Take care, Deb

Name:: Debbie
Email:
Date:: 08/22/03
Time:: 01:00 PM

Comments

Hi Out there--Hi Deb, you must come by and visit next time you are down! Sorry I haven't written all week--we had a rough couple of days with Payton.. He is fine now and looking like his normal self but he had a terrible night a couple nights ago and from a HUGE mucus plug de-sated ON the bipap down to zero the other morning and fortunately we got it right away but i had never seen a plug that the bipap couldn't get past before--NOT comforting in the least.. He was looking roughed up for a day after and now looks back to his normal pink self. THank goodness.. He goes to his pulmonologist on Tuesday so I am looking forward to hearing his new WEIGHT and also discussing the plug that blocked the bipap.. We had (this whole THREE years) the bipap set to "spontaneous timed" so that he would have to initiate a breath before the bipap would "boost" him air, but we changed it last night to "timed" and this way if he gets lazy or has blockage, it should take care of the problem right away... We are going to have to confirm this info with the doc, but we are thinking this is the way to go from now on while he sleeps.. The GARAGE SALE is tomorrow--so PLEASE drop off any stuff that you have TODAY OR TONIGHT to ROB at the shop or me at the house!!!!!!!!!!!! THANK YOU EVERYBODY!!!! Rob is actually going to make a couple stops to pick things up today so if you need him to pick something up, let me know!!! We will be there from 7am-1pm, so drop by if you'd like to find some treasures of your very own.. :) I will let you know how it goes tomorrow and I hope everybody has a great WEEKEND!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!:)

Name:: Debbie
Email:
Date:: 08/23/03
Time:: 03:09 PM

Comments

WOW--WHAT A HOT AND STICKY--SLIMY DAY--This was by far the most disgustingly humid garage sale we have had.. 1/2 way through the day I couldn't even think about it without wanting to RUN for the showers!! We had a GREAT day--and that is WITHOUT even having an AD in the newspaper.. Turns out that if you do not get the ad in before noon on Friday--you lose.. SOOOOO, without an ad (we are right on Royal Palm so a TON of traffic sees us and stops by) we still raised $1010.00 for Paytons Pals!!! Pretty amazing huh?? I want to thank Jen Berman for coming at the crack of the crack of dawn--she was even there before me!! and for also baking all those amazing cookies/brownies/muffins!! Your skills are appreciated!! I want to thank Kelly, Matt & Max Ernst for coming and helping us out in the unbearable heat!! CONGRATULATIONS on buying your LOT in Port St. Lucie today!!! HOW EXCITING!!! AND you will only be minutes away from the Mawhinneys!!! I also want to thank Lori, Jimmy, Hayden & Brody Mawhinney for coming out and helping too!! Esp. Lori because you are the only one of us (besides Kelly-Kelly is actually the toughest:)) that will say NO to these people that get ridiculous!! THANKS for working so hard!! & for making your fabulous chocolate and vanilla muffins!! WE ARE THE CHEAPEST--MOST REASONABLE garage sale in town and people are always trying to BEAT US!!! It is really SOOO pathetic that sometimes you just have to walk away--but THIS is how a garage sale works, and I guess we should be thankful for those people because they definitely make up about 1/2 the sales! I want to thank Tamara PADGETT (newly married to Rafe!:)) for coming out and staying to the sweaty end!!! AND also thanks to your mom and your fellow Outbackers from Plantation that came out to help!!! & TO SHOP!!! I also want to say thankyou to Robin Seigal who was there all day and never stops helping us!! I have a new Paytons Pals shirt for you to wear Robin!! Please remind Rob and I will make sure he takes it to work!! I also want to thank Ricardo who worked from 5am this morning (not to mention packing boxes and moving and loading and unloading yesterday) and also my husband, who was up at 4:30am to make sure everything was there and unloaded before 7am!! Thank you to those of you that stopped by to pick up a new treasure and to those of you that donated your "goods" to our cause!! ALso, thank you to Christian Peterson for getting up at 6am and helping me unload all those t-shirt boxes at 7 o'clock in the morning!!! Thank You to everyone that wished us well or stopped by to say hi or just made donations!! THANK YOU DAD for letting us use your home to have this garage sale and being so generous with your home & time... and of course, having the great Beatles' tunes for us to listen to!! And, most of all, THANK YOU MOM--for making sure that Payton was well taken care of, safe and in the nice cool a/c!! while we were doing our work... The garage sales are a great way to raise money, but there is NO SMALL AMOUNT OF WORK INVOLVED!!! Between all of the collecting of the stuff, moving and hauling it all over town, wheeling and dealing with "difficult" people all day, sweating our buns off, getting rained on, and then hauling butt to get whatever is left into the garage, you are pretty much DONE by the end of the day!! Well, THANK YOU EVERYBODY for the joint effort--I HAVE to go do this again tomorrow because we have an ad in for tomorrow instead of today, but I guess it will be better to try and get rid of everything now as opposed to keeping it all in my poor moms' garage til next year!!! Wish us luck!!!! LOVE LOVE LOVE LOVE~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Name:: the padgett's
Email:: tgatorbabe@aol.com
Date:: 08/23/03
Time:: 04:44 PM

Comments

deb, i'm so glad that today was a huge success...i promise to be tougher next year :) ...i already talked to lizlaura about a template for the brochure and she'll be working on a demo soon...i just know you'll love what she comes up with...i just read your info on your family being tested for sma...it was a little overwhelming just to read, i can only imagine what the past 3 years have been like for you and rob...we just have to keep BELIEVING that an angel will continue to watch over PAYTON until they find a cure...he is so incredibly strong and he doesn't even know what an inspiration he is to us all...WE LOVE YOU GUYS, rafe, tamara and madison

Name:: Debbie
Email:
Date:: 08/25/03
Time:: 11:02 AM

Comments

Thank you for your beautiful words Tamara.. It is true that Payton has been responsible for so much good, so much awareness, so much more than most of us will ever be able to impact in our lives.. He is very tough and he is hanging in there.. We are of course, hoping and praying that a treatment will come in time for him and be able to improve his quality of life.. Keep your fingers crossed everybody.. We will not have another garage sale until next August, but because I know that everybody accumulates "stuff" throughout the year that they want to get rid of, please feel free to drop it at Robs' shop or my house throughout the year and we will keep it in Robs' storage unit til next year--if you can put it in a box that says "garage sale" on the outside of it, THAT WOULD BE FABULOUS and a big help, but however it comes is fine.. There is a ton of stuff that just doesn't even fit in a box.. We still have plenty of stuff left over from this year, but we will save it til next August.. We will NEVER do a Sunday garage sale again.. I think we finally learned our lesson--on Sun. we had an AD and still had about 20 customers and raised about $110 in FIVE HOURS.. compared to $1000 in about SIX hours on Sat.. It seems that the people who like to go to garage sales like to go on SATURDAY only, so that will be our day from now on--NO SUNDAYS!! Payton is looking good, and his new pics are coming soon! :) Our next fundraising venture will be the Stoneman Douglas Highschool pin sales and awareness campaign.. That should be right before Christmas and there WILL be a car wash sometime in the next 6 months--just NOT SURE when.. Don't want to overwhelm ourselves or anyone else, so it may be next year before we have the car wash!! Thank you cards for the event should be out anytime now, so check your mailboxes!! There is a pic from Paytons 3rd bday bash on the card!! He already looks sooo different--Well, Take care everybody & Have a GREAT Week!!!!!!!!!!!!!!!!!!!!!!!!

Name:: Lori Mawhinney
Email:: milf71499@aol.com
Date:: 08/28/03
Time:: 10:45 AM

Comments

Hello Freemans, I don't think I have ever wrote a journal entry.(at least not on this board) Anyway, I thought it was about time I wrote. First and foremost it is my utmost pleasure to volunteer my time for this organazation and what it represents. I sit back sometimes and really think about the big picture and what really matters in life and it is your family, but most importantly your children. We as Mothers endlessly go, till we have not an ounce of energy left. Bottles, diapers, baths, meals, discipline, endless laundry, school for us and the kids, husbands and many other tasks. Point being, I feel like that is what we were put here for. As a Mother all you want is to love, protect and nuture this little person into being the best human being possible. Being careful with each and every step. Not yelling to much, or working to much or even not giving enough kisses!(is that possible?) You have such a difficult role Deb and it seems as if the moment Payton was diagnosed or soon there after you knew what you had to do. WOW, and how you did it! In the last three years we have spread so much awareness, had so many fundraisers, and helped so many kids and familys with SMA. Not to mention the huge check that was just presentd to the University of Miami. It amazes me still to this day how feverish you are! But then again, like I said we as Mothers are put here on earth to be commited to our children 24-7 and you should be the poster mom for that campaign!!! It wouldn't hurt to teach these ungrateful people how precious a child's life is! Never, have I seen a more amazing WOMAN, MOTHER AND WIFE. Your determination is an inspiration daily to me and I want you to know I am so proud to have you as a best friend! I love you and your family sooooooooooo much and together we will find a cure!!!!!!!! Love always, Lori P.S. Rob you are pretty amazing too!!!!!

Name:: Debbie
Email:
Date:: 08/28/03
Time:: 08:44 PM

Comments

WoW Lori~~ THANK YOU!!! I feel VERY LUCKY to have a friend who can stick through it all with me and for soooo long too---I know that for a lot of people it is really hard to continue to stay close to us because it is so difficult to see Payton so compromised and for so long~~It must be hard to know what to say sometimes, etc.. BUT, there are those of you that NEVER GIVE UP and ALWAYS HANG IN THERE & NEVER DISTANCE YOURSELVES from us~~ NOW THAT, is AMAZING.. REALLY, I mean it. We are Paytons mom & dad, so this is our life~~might as well make the best of it for all of us and why bother complaining?? You all on the other hand, you could have walked away from us, washed your hands of this entire situation, no questions asked, BYE-BYE.. AND THAT WAS NOT THE CASE. My closest friends and Robs' closest friends and ALL of our family has been THERE.. I mean going out of your way to BE THERE when we have a fundraiser and SPREAD AWARENESS in your day to day lives--I am talking about taking time out of YOUR busy days and dedicating hours and hours to saving Payton and kids like him--when you are in no way affected by sma other than by being our friends.. Like I said, THAT is amazing.. Believe me, a LOT more amazing than me or Rob or anything we have done.. We are only doing what ANY parent would do for their child.. Anyway, I could go on & on, but I thank you for the things that you say Lor, and everybody else too, I know that you come to my house and wonder how the hell we live like this but we just hope that there comes a treatment in time for Payton so that he may live a better quality of life and we KNOW that no matter what, we all, as a group, as a team, with Payton as our leader :), have made and will continue to make a HUGE difference for a whole lot of kids that deserve to have their YOUTH--For a long time I figured that I would do nothing but focus on Payton and finding a treatment, but as the years have gone by, I realize that we are all getting older too, and of course, we think about the future, having other children, our careers and how all of that is affected by Payton.. We don't know what the future holds anymore than anybody else but we are doing the best we can to get by and always take care of Payton and his needs first.... SPEAKING OF PAYTON AND NEEDS--Did I mention that he gained TWO POINT TWO POUNDS This month???? Well, he did and all the docs and nurses were THRILLED, along with me, daddy & grandma too of course.. HE is really packing on the pounds!! He even has a little double chin:) Well, take care everybody and have a GREAT WEEKEND!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! PS>> Dionne is having a fundraiser at the Cinema Paradiso in Fort Lauderdale in honor of her nephew Zeke Lerner (he lives in California, has type 2 sma and is the same age as Payton).. There will be one of the stars of the film there to sing a song before the flick and his name is "t-bone" The tickets are $15 and all of the money raised goes to FSMA (Families of SMA) Just so you know, FSMA is a non-profit organization that has donated millions of dollars towards research for sma treatment/cure and this is a GOOD thing..!! Let me know if you need more info or would like to purchase tickets!!! LOVE TO YOU ALL~~~~~~~~~~~~

Name:: michelle
Email:: aworrell@columbus.rr.com
Date:: 08/31/03
Time:: 07:48 PM

Comments

Hey Debbie - Just wanted to drop a note to say Hello. I have been reading your journal -- you are unreal. The Outback blimp was in Columbus for the game yesterday. I actually saw it on Thursday coming home from work. Go Outback. We love that place. We are getting a Bonefish Grill - can you come up and be manager!!?? Just kidding. It sould be openning in a few weeks. Payton sound great and great on gaining that weight. Do not let those doctors push you around. The t-shirts are great and we also had another one made - tell Rob sorry for not using him but it was last minute. But he will be on my list for other shirts. Just wanted to also say what a great bunch of PALS you have down there for SMA awareness. You guys are awesome.

Name:: Debbie
Email:
Date:: 09/01/03
Time:: 12:57 PM

Comments

Hey Michelle!!! How cool that you saw the Outback Blimp!! It is called the bloomin' onion--I have never seen it myself!! Outback is a WONDERFUL company--really, not just saying that--they are AMAZING in the amount of charity work that they do and how much they give back to the communities that surround them--not to mention they are also a GREAT place to work--the owners of Outback are regular people just like you and me and they are sure to take care of their employees--unlike alot of other big corporations out there that couldn't care less about the little guy--When Payton was diagnosed with sma, my boss came to ME and asked ME what he could do to help and basically got me started with my first fundraiser (that raised $40,000!!) and here we are--over $160,000 later for research and only a little over 2 years of raising money and awareness.. Well, Happy Labor Day everyone!! We are taking Payton to the movies in just a bit so I must go and then I must work later, but I hope you are having lots of fun on your day off and not getting rained on!!! PS.. We saw Dr. Baumbach on the MDA telethon--she is one amazing lady--SO DEDICATED to her research and finding treatments for these diseases.. If it were not for docs like her, there would be NO hope whatsoever.. Have a great week everybody~~~~~~~ OH PS>>>> I TOTALLY FORGOT!!! HAPPY 32nd BIRTHDAY BOBBY!!!!!! I hope it was a fantastic b-day and please give all of your children hugs and kisses for us here in FLa!!!! LOVE YOU, Deb:)

Name:: Debbie
Email:
Date:: 09/02/03
Time:: 08:18 PM

Comments

Hi!! For those of you that are inclined to vote based on the facts surrounding issues that actually affect us middle class people or issues like HEALTH CARE which we do NOT have in these united states (unless of course you live under a bridge or make $20 million a picture) please go to : http://www.deanforamerica.com/site/PageServer?pagename=policy_statement_health and read about Howard Deans' take on health care issues!! This looks like the guy we will be voting for next November--we NEED THIS GUYS--we will never find a cure for these diseases without someone that actually WANTS to save these children--that is the truth... HOWARD DEAN.. I will post more info on this guy later.. PS>> Has anyone seen Bowling For Columbine?? We just saw it a couple days ago and it was AMAZING--I mean one of the best movies I have EVER seen!! This is a must see!! Please let me know if you need more info about the movie screening on the 15th of September--Payton looks good--SSI is FOREVER bothering us like you have no idea--I will be back soon--Love, Deb

Name:: Debbie
Email:
Date:: 09/04/03
Time:: 06:13 PM

Comments

Hi out there--My sister went to a Howard Dean rally in California last night and things were incredible!! This guy is a doctor and was the governor of Vermont (the ONLY state that has health care for EVERY CHILD in its' state).. He is really amazing--just like you and me and he actually CARES about our kids, our economy, education, jobs, the middle class.. He is very articulate and exciting to listen to--there is a debate tonight in which he will be on--try to catch it if you can--Payton is good, he is still pretty dependent on the bi-pap most of the time but we are trying to wean him off of it while he continues to gain a bit of weight--not easy to do--I hope that you are all doing well--take care, Deb

Name:: Dionne Ryff
Email:: dryff@alliedadvpub.com
Date:: 09/08/03
Time:: 11:10 AM

Comments

Hi guys!!! Just wanted to post a reminder about the SMA Benefit screening of "The Fighting Temptations" happening next Monday, September 15th at 7pm at the Cinema Paradiso theater in downtown Ft Lauderdale (it's located right near the courthouse on 6th Street, in fact, I understand that the Jury parking garage is located right next door to the theater (Cinema Paradiso is actually a renovated church, so from the outside it just looks like this little church, but inside it's this very cool movie theater...) Anyways, if you are planning to attend, you MUST call to RSVP a seat this week (954) 525-FILM (3456) x107. Leave your info on the machine and they will call you back to confirm. Tickets for this event are $15 per person and that includes: a performance by and Q & A with one of the film's stars, T-Bone (who is a Grammy nominated Rap Artist and he plays a fun part in the film!), the movie, popcorn and soda!!! Pretty great price for all that fun!!! And the movie is really good! I've actually seen it 3 times already and it still hasn't gotten old!!! In fact, at all of the early advance screenings, the audience reactions have been outstanding!!! From what I understand there are still PLENTY of seats available, so please call as soon as possible to reserve your seats! All proceeds from this event will be donated to Families Of Spinal Muscular Atrophy to help find a cure for SMA for Zeke, Payton and the thousands of other kids who are suffering from SMA...Hope to see you all there!!!

Name:: Debbie
Email:
Date:: 09/08/03
Time:: 03:05 PM

Comments

Hey Dionne!! SOunds like the premiere is going to be awesome!! Rob and I will definitely be there!! Let me know if you need anything or if we can help at the premiere at all!!! Cuba Gooding and Beyonce Knowles are in the movie right?? We are bringing a group of people from Robs' work, so we are very excited!! ... I have had an aversion the computer lately--sorry for not writing as much--it is just that everytime I turn around the computer is down or email doesn't work and it just turns you off--almost like I don't want to get irritated with the computer, so I leave it alone--:) Maybe it is time for a new one soon!!! We got this computer (don't laugh) from the home shopping network years ago and Rob treats it like it is a pet and refuses to get rid of it and continues to fix it and fix it and fix it over and over again--I think it is a challenge for him--OH WELL right---Paytons' new room is all set up and is FANTASTIC!!! He just loves it so much too, he is constantly talking when he is in there and he has been having me sleep with him (I can fit now!!) in the mornings--I think he is a bit spoiled but it shouldn't be any other way--He is STILL the bipap baby but he looks SOOOOO good and has really gained weight nicely so I am not going to worry about it yet... The weaning process will surely be a challenge--I think it is also partly because he is so used to the bipap and the super easy, nice breaths--who would want to go back to struggling?? Even for a moment?? SOOOO, we will be working on that for months I am sure... He is SUCH a big boy now, talking like crazy (sure wish I could figure out what he is talking about!) and VERY alert and VERY interactive--lots more than ever before anyway--he actually has been letting me read him BOOKS!! That was something I never thought would happen! I am still working on the venue for May/June so if anyone has any ideas, let me know!!! Hopefully we will see you next MOnday at the Cinema paradiso!!! Love, Deb

Name:: mary
Email:: tinkersevenbell@aol.com
Date:: 09/11/03
Time:: 11:53 PM

Comments

Debbie, Thankyou for inviting me to your birthday dinner.It was alot of fun.This website is really amazing!I hope you have a great birthday and have alot of fun next weekend at the wedding.Take care and I'll talk to you soon. All my love, Mary

Name:: MJ
Email:: TWEETYROLL88@aol.com
Date:: 09/12/03
Time:: 08:55 PM

Comments

Hey Payton! WOW you got a new room too? I just did. My room is light blue and lavender. What color is your room? Keep on talking (even if mommy can't understand you)! I'm sure that mommy & daddy will figure out what you are saying soon! Hey, what's your favorite book? I like Double Trouble in Wala Wala. Ask your mommy for that book, I think you'd like it! Hugs & Kisses, MJ

Name:: Debbie
Email:
Date:: 09/13/03
Time:: 12:06 AM

Comments

HI MJ, & Mary!! YES< Payton got a new room--it is blue and he has a new bed and MICKEY MOUSE TV!! Yes, he absolutely LOVES it--he was asking for me to sleep with him in the mornings the first few mornings and then he didn't want that anymore--so I am feeling dumped--LOL--Just kidding, I think he got used to it and didn't need me--to feel safe anymore!! My birthday is next Friday but I had a small dinner with just a couple girls last night--it was VERY GOOD--If you haven't already tried Bonefish Grill in Coral SPrings--it is FANTASTIC--the food is really wonderful and they are owned by OUtback Steakhouse so they are run very well--and we get 1/2 off!! What a deal huh?? :) Well, I wanted to give directions to the Cinema Paradiso for those that are going--See you there!! Love, Deb I-95 to Broward Blvd. exit. East on Broward Blvd. to SE 3rd Ave. Right (S) on SE 3rd Ave. - go over the bridge to SE 6th Street Left onto SE 6th Street Cinema Paradiso will be on the left side (it just looks like a church from the outside...) -- 503 SE 6th Street (954) 760-9898

Name:: Jennifer
Email:: jp954@hotmail.com
Date:: 09/13/03
Time:: 10:21 AM

Comments

Hey Debbie. Happy Early Birthday! Sorry I haven't been on in so long. Things have been so crazy. Rodd started a new job and I was almost about to myself until they offered me to stay. I totally forgot about the garage sale- I am so sorry! Congrats on Payton's new room. I hope he is doing well. Congrats Mary for the baby on the way for your engagement. I am very happy for you. Well I have to cut this short because I am at work. I will talk to you soon Debbie. Love, Jennifer

Name:: Debbie
Email:
Date:: 09/14/03
Time:: 10:36 PM

Comments

Hey Mary & Jenn!!! Thanks for the birthday wishes!! Yes, on the 19th I will be 33 years old!! I am getting up there!! I found a couple of gray hairs on my head but the jury is still out on whether or not that is due to age--:) Don't worry about the garage sale Jenn--we are keeping stuff in storage from now on so if you have anything throughout the year you can just drop it off and then we have one BIG garage sale in August of every year!! Say hi to your mom and Rodd too for me!! Payton is good--he is still loving his "big boy" room--I hope that he is even happier with the lithographs we are putting up!! I wanted to thank everyone that is participating in tomorrow nights premiere--we will be there--so we will see you tomorrow if you are going and have a GREAT WEEK!!!!!!!!!!!!!!!!!!!!!!I also want to wish my best friend Leah Flynn a happy 33rd birthday in heaven--It is the first time in 18 years that we have been unable to chat on her birthday and it was a difficult day (the 8th) for all of us here in Fla. that are missing you including my whole family--We love you and miss you Leah--Happy Birthday--

Name:: Debbie
Email:
Date:: 09/16/03
Time:: 12:59 AM

Comments

Hello out there---We want to wish a HAPPY ANGEL BIRTHDAY to Ryan James Nolan who went to heaven on February 24th of this year--He would have been 6 years old--We love you and miss you Ryan--& we hope that you are running and playing and eating and swimming and doing all the things that you were not able to do with spinal muscular atrophy---We went to the premiere of The Fighting Temptations at the cinema paradiso tonight in Fort Lauderdale--It was fantastic!! There was a gospel rapper in the movie that was at the premiere and he did a live interview with Deco Drive from the theater--there were a couple of choirs there that sang a couple of songs and then we watched the movie--it was extremely powerful and moving--it really was good--after the movie they read off raffle ticket numbers and it was hilarious because i had the raffle ticket for the outback steakhouse gift certificate and of course, I let them call someone elses' number being that I brought it to the event!! I was hoping to win the signed movie poster so that we could frame it and put it in next years auction--but it worked out great anyway because we met with T-Bone and told him about Payton and he signed a different poster for us and we will have it framed and put it in the auction--He was very good (he does a spanish rap with salsa that is really really good) and he was VERY nice!! Hopefully he lives in south fl. and we will see him again!!! Well, if anyone is thinking about going to the next premiere, it is totally worth it!!!! We are not sure what Dionne raised but I am sure it is a TON of money for sma RESEARCH!!!!!! HOPEFULLY--we are just "baby steps" away from that cure or treatment--keep your fingers crossed folks--the clock is ticking--Love, Deb

Name:: Jhene
Email:: kiwimiss2002
Date:: 09/20/03
Time:: 10:58 AM

Comments

This is a great idea!

Name:: MJ
Email:: TWEETYROLL88@aol.com
Date:: 09/22/03
Time:: 01:47 AM

Comments

Hello, How are you today? How is your weekend going? I am home sick and Wyatt is keeping me company, snuggling in bed with me. If you check out my caringbridge website, you can see a picture of Wyatt and I snuggling in bed. Have a good day. Love, MJ www.caringbridge.org/ny/mjpurk http://www.our-sma-angels.com/Margaret/ ps. how is my little buddy doing in his new bedroom...i am still waiting on my furniture!!!!

Name:: Talia
Email:: ltjgal555@hotmail.com
Date:: 09/23/03
Time:: 01:16 PM

Comments

Hey Deb, Payton and Rob! 1st Happy belated B-day deb, sorry I didn't call my life has been really crazy lately you know I was thinking about you and how wonderful you are. Payton I'm sending you a huge kiss and I promise one day soon I'll be there to visit. I'm sending you guys lots of love! MUAH! (that was a kiss hehe)

Name:: Marni
Email:: littlemarni@aol.com
Date:: 09/24/03
Time:: 01:47 PM

Comments

Hello Deb, Rob and Payton, I have not signed the journal in a while, so I figured I would say hey! I hope all is well and I hope to see you soon. I love you all very much. XOXOXO Marni

Name:: sari palmese
Email:: palmess@nationwide.com
Date:: 09/24/03
Time:: 03:25 PM

Comments

Hi Deb, Rob, and Payton.. I really wish I had known about the last garage sale; I really would have liked to contribute in some way. I'm so happy to hear how wonderful Payton is doing, about his new room, his outings, etc. You are a truly the epitome of a supermom and I am constantly awed by all the things you have overcome, all the obstacles with the health care benefits, all the things you do on a daily basis to give your son the best of yourself to do the best for him. I'm sure glad that Payton has a Mom and Dad like you guys. Your dedication, devotion, and love for him, and for others suffering from this once "unknown" disease makes me feel truly guilty to complain about anything in my life. I pray for the cure as I know all who know you do, too. I'll try to visit your site more often so I can be aware of events planned on his behalf. I also want to wish you a very happy birthday. May all your dreams come true.Love, Sari

Name:: Lisa Mattiocco
Email:: lisa_mattiocco@yahoo.com
Date:: 09/24/03
Time:: 08:51 PM

Comments

Hi Payton!! I just wanted to stop in and see how you have been doing. I have not said Hello in WAY to long! I moved back to FL in August (we did not like the cold winters in NJ,BRRRR!!) I now live in Jacksonville so hopefully now that I am closer I can stop in and see you, Mom and Dad soon. I hope you are enjoying your new room, it sounds like it is REALLY COOL =). Well little man your in my thoughts and prayers. BIG KISSES and HUGS to you!! Love you, Lisa

Name:: JENNIFER BOLEN
Email:: JERIKA13@HOTMAIL.COM
Date:: 09/24/03
Time:: 10:59 PM

Comments

I AM STILL SOMEWHAT NEW TO ALL OF THIS AS IT IS JUST UNDER A YR SINCE MY DAUGHTER WAS DIAGNOSED AND THIS IS A BRAND NEW SITE TO ME. I ABSOLUTELY LOVED YOUR STORY AND AM TRYING HARD TO FIGHT BACK THE TEARS. I PRAY EVERYDAY FOR ALL OF OUR KIDS AND SECOND GUESS MYSELF ALL THE TIME WHEN I DO THINGS WITHOUT JERIKA RIGHT BY MY SIDE. I DEFINITELY RELATE TO ALL OF YOUR MESSAGE AND HOPE THAT ONE DAY SOON WE WILL ALL BE REJOICING. UNTIL THEN, WE HAVE EACH OTHER AND THAT IS LIKE NOTHING ELSE.

Name:: Debbie
Email:
Date:: 09/25/03
Time:: 04:58 PM

Comments

MJ, Talia, Marni, Lisa, Sari, Jennifer!!! I have obviously been neglecting my journal for TOOO long!! Rob & I went to Boston last weekend for his cousin HEATHER & RUSSELL'S wedding!! Thanks to my MOM! We had a wonderful time and it was so rejuvenating to get away and just have fun for the weekend--we were in extreme need of a Payton fix though and I was thrilled to LAND in florida (fear of flying didn't help much) and get home!!! The wedding was so nice and HEATHER looked SOOO Beautiful and Dallas And Chace were so cute in their little tuxedos.. SOO CUTE... We got to see Bumpa (Robs' dads' dad) He is so nice and so cute (He looked just like Rob 50 years ago and we know that he is who Rob takes after for sure!!) More than Ray even!! (Robs' dad) and lots of relatives and friends in Boston--ROZ, I had such a good time with you at the wedding--I hope you and BIll had fun eating lobster in Maine afterward!! Holli, Ashley and Troy, hope that you had fun at the game on Monday--we wished we could have gone with you!!! Ashley I promise I am sending you that necklace too!!!:) CONGRATULATIONS TO HEATHER & RUSSELL ON THEIR MARRIAGE 9-20-03 and also we want to say HAPPY BIRTHDAY TO TROY who turned 32 on the SAME DAY!! We both won the center pieces because the person with the closest bday to the wedding won them and of course with me being the 19th and Troy (who sat at another table) being the 20th, we won!! That was very exciting but we both gave them away because we were from out of town--PS>> Heather, thanks for letting us hang out in your house all weekend--I absolutely LOVE your home and your neighborhood and how SAFE everything is!!!LOL!! I know, I know, I am always amazed when the doors are unlocked!! We celebrated my 33rd bday in Boston and it was great--I was just so happy and thankful for the blessings that I have had and all of the obstacles that I have overcome in my life and to be able to make a difference for kids like Payton is so amazing--I know that Payton was given to me for a reason and with each year that I am blessed with, I will continue to fight for him and all of the children that suffer from SMA.. That is my focus, my familys' focus, and we will always make sure that Payton is well taken care of, happy and safe.. LOVE TO YOU ALL----Deb:)

Name:: DEBBIE
Email:
Date:: 09/25/03
Time:: 04:59 PM

Comments

PS>>> I TOTALLY FORGOT--HAPPY BIRTHDAY TO MARNI TOO!!! Who is now 29, can you believe it??? We share the same birthday-9/19 LOVE YOU MARN!!!!

Name:: Debbie
Email:
Date:: 09/26/03
Time:: 02:01 PM

Comments

Ok, we are trying to get Payton to see the Disney on Ice show in Miami (the one at office depot center does not have seating for handicapped in which Payton could even see!)--He would absolutely LOVE to see the Lilo & Stitch show there!! If anyone has details on handicapped seating at the miami arena, let me know!! We are not working on any fundraisers until the benefit in June (I Know that we usually do a few in between, but I am just overloaded with work, school, Payton, etc.. that I would rather just focus on the spring benefit & maybe next year I will be able to do a couple car washes or even a golf tournament which I know Rob would LOVE to do!!!) SOOOO, we are however, participating in a couple sma fundraisers this NOVEMBER!! Dionne will be having her second "CROP FOR A CURE" at the Scrapbook Den in Coconut Creek on November 8th!! It will run from 9am to midnight and if you would like to go 1/2 day or even just a few hours she will have different guidelines for different time!! Please email right away if you would like information and directions etc.. I will be there and I will be READY TO CROP!!! I have a HUGE box filled with scrapbooking materials from all the fundraisers we have done, so if you need a book, or a sticker, let me know!! LOL!! There will be food, fun, prizes, raffle drawings with a cool digital camera as one of the grand prizes!! and GOODIE BAGS!!!! There may even be some press coverage there!!! IN ADDITION----We are also participating in the "RUN, WALK & ROLL" to cure sma presented by the Jacob Rappoport Foundation in memory of Jacob who passed away last October from Spinal Muscular Atrophy. For those of you that do not know, Jacob is Shaina & Adi's son and Jordan's sister and our family and friends will be there to support the Rappoports in their annual fun run/walk! If you are interested in directions please email me, but for those of you that are familiar with the area, it will be held at QUIET WATERS PARK in Deerfield Beach, on November 16th from 9am-? Registration for the walk/run actually starts at 8am and the walk/run will BEGIN at 9am--there will be lots of fun and entertainment for the kids at 10am including food, petting zoo, face painting, clowns, bounce house and a live dance performance--for every $100 that is raised or pledged on behalf of walkers/runners you will have an entry that is entered into a grand prize drawing of a 3day/2 night stay at the Atlantis Beach Resort in the Bahamas including airfare!!!!! Ok, must get to PAYTON!!!!!!!!!!!!!!!!!!!!! LOVE LOVE LOVE~~~~DEB:)

Name:: Debbie
Email:
Date:: 09/27/03
Time:: 08:08 PM

Comments

What a FANTASTIC day!! We took Payton to the new Wellington Mall today (I don't know if it BRAND new but it seems pretty new to me)--His eyes were so wide they looked like they had toothpicks in them!! He was just trying to take EVERYTHING in and in the toy store it was just crazy--we asked him what he wanted and he picked out two toys--one was a buzz lightyear remote control car and the other was the Woody car--He was SOOOOO cute picking out these toys--He started to get tired after about an hour (we have been gradually weaning him off bipap ever since he finally gained some weight and fell in love with the bipap!!):) He is up to a couple of hours off the bipap and then he usually gets tired and wants to go back on--He did SO well in the mall though and I think he really enjoys shopping, just like his mom & dad!!I don't know if anyone local goes up that way much but the mall is pretty quiet compared to Boca and Springs and is SOOO nice!! We are taking it easy tonight as there is a STORM outside and going to JOE & NANCY'S baby shower in the am--Take care ALL:)

Name:: Debbie
Email:
Date:: 09/27/03
Time:: 08:09 PM

Comments

PS> HAPPY BIRTHDAY TO JAMIE WITHEY!!!!!!!!!!!!!!!!! We were in Boston when you had your birthday but I hope you had a great day with your family!! We will have to get together one night and celebrate all our birthdays for dinner or something!!! LOVE, Deb, Rob & Payton:)

Name:: MJ
Email:: TWEETYROLL88@aol.com
Date:: 09/29/03
Time:: 11:00 AM

Comments

Hey! How are you doing? I'm still sick, UGH! Wyatt is very cuddly lately and loves to snuggle with me. I wish Wyatt could come and snuggle with you right now! Hope you are having a great day! Love MJ http://www.caringbridge.com/ny/mjpurk http://www.our-sma-angels.com/Margaret/ Hey Payton: How is my buddy doing? I hear you went shopping and love it. Wish we lived closer as I would go shopping with you anytime.

Name:: Debbie
Email:
Date:: 09/30/03
Time:: 02:57 PM

Comments

Hi out there!! hi MJ!! I hope you are feeling better and I hope that you are over the pneumonia!! SHOPPING is the best--Payton loves to go shopping!! What a good child! LOL!! He really does love it though--& he seems esp. fond of the mall because of all the excitement there. We will definitely be taking him to Wellington more often--it is just not so crowded there. Payton is good & looking healthy--we are still weaning him slowly off bipap and it looks like it will be quite a while before he gets back to where he was but we will get there, it will just take time. He is SO comfortable and probably feels so safe on the bipap that I can't imagine how hard it would be to give it up at this point--but we will definitely do it VERY slowly so he feels safe. Payton had OT today and has PT tomorrow and Wednesday--still loves OT--still hates PT-:) BUT, LOVES SUSAN!! :) We are planning on going out and distributing flyers for the two sma events that we will be participating in this November, so if anyone would like to help pass out flyers and go to lunch with us, let me know--we will be doing it in the creek/boca area over the next couple of weekends! School is going good-I actually LOVE school--Chemistry is not the easiest class I have ever taken, but I just love learning and knowing that I will be able to be a nurse one day. Managing the Outback will probably never be feasible for me, and in acknowledging that to myself, I realized that I needed a career better suited to my lifestyle and Paytons needs--what better than nursing?? The hours are SO flexible--the need is great--the job is gratifying and I know that I will make a difference--the money is decent--Plus, I feel that I have a head start, knowing what i know from working with Payton for three years--Who knows, the sky is the limit, and I just may become a nurse practitioner or Physician's Assistant but for now, I am going to work on the RN and go from there. If anyone has gone this route already and has some tips or suggestions, please email me and let me know! We are going to the University of Miami this weekend to meet the new Chairman of Pediatrics that will be replacing Dr. Howell (who is going to work for the NIH)--we are very sorry to see Dr. Howell go as he is SOOO NICE and has been extremely kind to Payton and our cause and helpful with our efforts to find a cure for sma--but I know he will work hard & remember allof the children with sma when he is working for the NIH--We are really looking forward to "SMA DAY" next year, where we will be testing the public for sma carrier status--I hope that ALL of you will be there to support us in this effort--it will be a HUGE thing to test the public and #1- let people know who would NEVER have otherwise known that they were carrying this gene, how to handle future testing, pregnancies, etc.. #2- let people know JUST how PREVALENT this carrier status IS!! #3- spread awareness in that ALL of these people will get more aware, get more involved and for the future, it will be much easier to fundraise when people are more familiar with sma!! SOO, please help us SPREAD THE WORD!! I will announce when the testing day will be, and please try to get tested or have someone you know get tested!! THANKS EVERYBODY!!!! Love, Deb

Name:: Frank and Claudia
Email:: Frank33063@hotmail.com
Date:: 10/02/03
Time:: 01:18 PM

Comments

Hello family.... Sounds like you guy's are very busy as usual, Glad everything seems to be going great....I have not read this in a while,so i wanted to say hi.... you guy's have sure done alot in the past few months.... Good luck and keep pushing..... Yes the Wellington mall is great huh ? You guy's probably past right by my house, i wish we would have known....were only 10 minutes away..... Anyway maybe next time, you know you guy's are alway's welcome, but i also know you are very busy...... Love to the whole family..... Kiss for Payton..... :) Love , Frank and Claudia....

Name:: Debbie
Email:
Date:: 10/02/03
Time:: 07:29 PM

Comments

Hey Frankie and Claudia & Melyssa too!! I had no idea you were so close to the Wellington Mall! We absolutely LOVE that mall--it is so nice and SOO QUIET compared to all the malls down here!! You have to let Rob know exactly where your house is so we can stop by next time we are up there!! They have recently started drug trials (2 separate drug trials) for sma so please keep your fingers crossed!! WE NEED A MIRACLE at this point--I know that miracles do happen, so we are pretty much counting on that for Payton and SO MANY other kids that NEED ONE!! I will keep you updated as I hear anything! Payton had his RSV shot today and also PT--he was such a big boy--didn't even cry for the shot--not one tear--I was so proud--He has gotten tougher and tougher I guess--Tamara if you are reading this, I tried to email you THREE times and could not get through--Please email me or give me a buzz so we can get together on that project-PS>> I absolutely LOVED what you typed up!!! Well, LOVE TO YOU ALL & ESP. THOSE THAT ARE SICK, OR JUST PLAIN HAVING A BAD DAY~~Deb

Name:: Debbie
Email:
Date:: 10/03/03
Time:: 03:36 PM

Comments

Tamara, I hope you are out there--I have tried to email you several times & it keeps coming back--Just give me a buzz when you get time and we will go over all that stuff--it looks awesome though!!!!!!!!!!!!!!!!:)

Name:: Meghan
Email:: mrosevesey@icqmail.com
Date:: 10/05/03
Time:: 03:27 PM

Comments

Debbie, I emailed you, but thought it might help if I dropped a little note to you in here. I am interested in the Crop-a-Thon, I know exactly where it is, since I live right down the street, but if you can email me with specifics that would be great. Thanks, Meg

Name:: Debbie
Email:
Date:: 10/05/03
Time:: 09:33 PM

Comments

Hi Meghan!! I just emailed you so if you don't get an email from me, let me know right away!! I emailed you with some details and I will have pledge sheets after Tuesday so I will get them out to anyone that needs them--just give me an email or a buzz and let me know who needs them--Registration fee is $25 and you must have at least $100 in pledges for a full day and 1/2 day--I am not sure about 4 hour spots and if pledges are $50 if you do less hours but I will contact Dionne and find out!! It should be very FUN!! There will be lots of prizes and goodie bags for everyone that participates and of course, CROPPING til YOU DROP!!! Thanks everybody for getting involved!! I have been working all weekend--and we had a TERRIBLE afternoon on Friday, so I have just been trying to figure out where to begin--it is all about SSI/Nursing and LOTS of headaches/frustration/aggravation, etc... We will be seeking an attorney tomorrow because we just don't know what else to do or where else to turn for the nursing care/situation... Please keep your fingers crossed for us, I think it is going to be a difficult road but we will hopefully somehow get things to where they should be. Payton is doing really well with his new weight gain--he has only gained 2 1/2 pounds so far, but that is a lot for him--he looks super and of course, is soooooooooo cute--he has been talking so much lately--he asks for me to come lay down with him in the mornings sometimes--not EVERYday and he is very particular and bossy about who and when but when he says yes, it is TOO cute. I want to say THANKYOU to Jen B for putting together that awesome project for the pin drive campaign!! It looks AMAZING!! And also to Tamara for printing up that AWESOME flyer or brochure info--I absolutely LOVED it--Jen put it in her pin drive presentation and it looks awesome! THANKS guys! I am going to order a bunch more pins so if anyone wants one let me know!! We have the bigger ones for $10 and the smaller ones for $5 (I also have a TINY pin that is $2) so just let me know!! ~~LOVE TO ALL~~

Name:: Debbie
Email:
Date:: 10/11/03
Time:: 09:07 PM

Comments

Heylo out there!! Very busy few days here--Jen B and I went out and passed out flyers today all over Coconut Creek/Boca Raton for the Crop-for-a-Cure today--Hopefully there will be a HUGE response from the flyers!!! THANK YOU Jen for being such a huge help!! Next week we should have a few extra people and we will go to our new favorite place--Smokey Bones! for lunch so if anyone would like to join us please let me know!! These hours can also count for community service for those that need hours!! :) We have had the worst living nightmare with SSI/Medicaid etc.. but hopefully by tomorrow, we will know which direction we are going in next--We talked to an attorney last week and got some valuable information but the "system" is ridiculous and if there is any energy left at the end of the day, we will definitely try to be a part of changing this RIDICULOUS system.. I, for one, think that you're child with a genetic disorder that is life threatening or handicaps them in anyway, they should have their OWN place to go, with a case manager, that guides you along the way, so that you can give the best care possible to your child, when they are needing you so much, as opposed to using up every last bit of energy that is left on fighting a HUGE GOVERNMENT ORGANIZATION like SSI--one in which I cannot defeat... Wish us luck--talk soon--love, deb

Name:: Debbie
Email:
Date:: 10/11/03
Time:: 09:08 PM

Comments

Sorry, not by "tomorrow" but by Monday!!

Name:: Debbie
Email:
Date:: 10/13/03
Time:: 12:36 AM

Comments

Hello out there!! I am thrilled to say HAPPY BIRTHDAY to little Jordan Rappoport who turned 4!! Payton was very excited to celebrate your birthday with you and was excited all weekend to go to your party!! The building was very cool with tons of gymnastics and games etc.. Thanks for having us! & esp.. thanks for Paytons' cool little Nemo doll--he doesn't have that one & it was perfect--ALSO, THANKS for saving us that spot in the front--that was SOOOO CUTE--"reserved for Payton!" :) Payton went to Toys R Us straight from the party and got some new toys including some little Robot that walks around says the abc's.. I hope he likes it!! I was at work tonight--not very busy with all of the high voltage sports going on lately--YEAH FOR THE MARLINS!!! I was very excited to see that they won tonight!! Rob & I watched a GREAT movie on HBO or some cable channel tonight called "61" It is a baseball movie about Roger Maris and Mickey Mantle and it was EXCELLENT!! It seemed like an old movie, maybe a couple of years, but nonetheless, very good.. Well.. have a good week everyone--Love Deb

Name:: MJ
Email:: TWEETYROLL88@aol.com
Date:: 10/13/03
Time:: 02:12 AM

Comments

Hey Payton Hi! How've you been? I'm finally am feeling better! I started some new medicines that really help! Wyatt is really sad today. My dad vacuumed the couch so Wyatt can't sit or lay on it. Oh well, guess he'll just have to snuggle with me! Hope you are doing and feeling GREAT! Love and hugs, MJ http://www.caringbridge.com/ny/mjpurk http://www.our-sma-angels.com/Margaret/ Tell your mom to give you a big, big hug from me!!!!! Wish I was closer to give you one myself. Love you, my little buddy!

Name:: gina weeks
Email:: teamweeks@bellsouth.net
Date:: 10/13/03
Time:: 07:34 PM

Comments

what a beautiful and heartbreaking story. you are wonderful parents Payton is a very lucky little boy. My prayers with be with your family. Gina

Name:: Debbie
Email:
Date:: 10/14/03
Time:: 01:29 AM

Comments

Thank you Gina! Hello MJ!!! Thank goodness you are feeling better--it stinks to be sick! Just got home from work--not such a great night--Well, have I mentioned what a week I'm having?? It is really turning into two weeks and from the looks of things it will turn into a month minimum... UGGHHH... I cannot even explain without completely losing it most of the time--but what it comes down to is this.. They have cut off our SSI--they say we have too much income?? SOO, along with the SSI, goes the medicaid.. The medicaid pays for all of Paytons therapies including speech, OT & PT.. It also covers alot of little things but the MAIN thing that medicaid covers is the therapies and #1--NURSING CARE.. Now, for those of you that haven't had any home care nurses working around your house lately--the cost is around $150,000 per year.. I know I know, you're definitely thinking What? BIG DEAL!!! Rob & Deb can afford THAT!!! But, ever since I stopped making movies we just are not in that income bracket anymore.. NO, NO, I must be honest and tell you that we are not EVEN CLOSE!!! Therapies are also in the tens of thousands per year but not QUITE as much as nursing--Well, they will both be cut off as of November 1st.. Ok, what next?? Well, it seems that with each government agency that I go to, no one really knows what the hell the other does, but they do know this.. NONE OF THEM WANT TO BE THE ONE TO PAY. SOOOO, you get shuffled around and shuffled around until you finally figure out on your own where to go next, or where you will have the best chance for success next.. Every organization has its' own list of "things to bring to your appointment" and each list has every single piece of documentation pertaining to every single person living in the house imagineable, listed on it, except for maybe your library card acct. # and the last years transactions.. This is SOO time consuming and stressful and none of these organizations work together, so you must get all new copies for everyone and all new appointments.. IF I had the time to keep up with all the separate appointments and doctor visits that they ALL want me to go to--I WOULD BE SUPERWOMAN.. And I am not. I STILL have appointments that they want me to take Payton on for school, etc.. that I am just not finding enough days in the week or enough help to bring him to.. OF COURSE, if it were easy to travel with Payton, it would be different. BUT, it is not even just difficult, it is impossible to do alone. I must have someone with me if I am going to drive Payton anywhere. It is also not just a matter of throwing him in the car, and buzzing down the street. There is a ton of equipment that I must bring, including suction, cough machine (for emergency plug), pulse ox, ambu bag (just in case), bipap (can't leave home or anywhere for that matter, without it), etc.. did I mention diaper bag?? FOOD?? He is on a continuous feed 22 hours a day--ANYWAY, needless to say, being mobile is a project.. And all of the people that are trying to work with me on Paytons case--"ok, go here, pick up this, fax that over, drop this off, pick that up, Payton needs to see our docs, you have to come back next week, oh, and you have to be here at 11am.. TOO BAD if your mom gets by to babysit at 3pm.. Your APPOINTMENT IS AT 11AM. Period. "Well, I can't make it at that time.. Well, I guess you don't want our help then. OH MY GOODNESS. IS THIS FOR REAL??? Payton is sick. We can't afford nursing & therapy. This stuff helps his quality of life, our quality of life and helps us to function in an otherwise totally upside down life. (this is the short reason of why we need these things--check back for the long version on another bad day) We should not have to FIGHT for these things. We should get the help we need and work with people that want to help us. People that understand (sort of) what our lives are like and how we just can't run around at their convenience--MUCH AS WE'D LIKE TO. It is beyond ridiculous and it is no wonder that families fall apart, children just die, and no one even knows what the hell is going on. Cuz at the end of the day, who has the energy to FIGHT all the time?? NOT ME. I was willing to fight EVERY DAY When Payton was first diagnosed, but I am TIRED. This has been going on a LONG time. WHY can't they just accept the fact that he is legitimately sick, and HELP him. If a child is sick (like Payton) and the parents just can't deal with all that goes with taking care of a child this fragile, compromised and needy, they can drop the child off at Broward Childrens Services(not a nice place to visit let alone live) and they go home. IF a medically trained (40 hours of training) foster family adopts this child, the state pays this family approximately $2000 per month to take care of this child. Medicaid is of course automatically provided, ensuring that the foster family has enough nursing, etc.. and thus making sure the family can FUNCTION (ie.. work, sleep, take a shower) and still take good care of the child.. SOOO, THEN>>> WHY THE HORRIFIC treatment for the biological parents that have decided to do what they feel is right and give the best care possible of their baby?? You are KIDDING me right??? I am so not sure where to make my case for all of this, but one day I promise you I will. Love to all out there that have supported us in this sma nightmare. Goodnight.

Name:: sari palmese
Email:: palmess@nationwide.com
Date:: 10/14/03
Time:: 03:20 PM

Comments

Name:
Email:
Date:: 10/14/03
Time:: 03:34 PM

Comments

Debbie.. Your fight for benefits is heartbreaking;everything you say is true:its's like the middle-income person, the one who works 2 jobs, eats burgers and dogs while the unemployed person buys steak with their food stamps. It ABSOLUTELY makes no sense that you can't get the help you need. The health care situation is horrendous!I remember a time when I needed some medical assistance, and same thing,I "made too much money." Yeah, right. Prisoners get more freebies than honest hard-working people like yourselves. To think that people can't afford to take care of themselves and there loved ones.It's shameful. How can we get the laws to change!! I know.. Deb, you are gonna have to run for office. Governor Deb Freeman. Sounds good to me. I hope with all my heart, that your benefits are not taken away. My prayers are with you. Sari

Name:: shaina
Email:: shaina@ourshootingstar.com
Date:: 10/14/03
Time:: 07:55 PM

Comments

hi payton- just wanted to let you know how happy we are that you came to jordan's party. it was one of the best parts for us. she was so excited to give you the little nemo she picked out for you and she kept talking about how payton was going to be at her party. we know it is no small feat for you to go places and we just wanted to tell you how much it meant to us and how special it was to have you celebrate with us. you look so cute with your new double chin! p.s. your parents are such amazing people- you are so lucky to have them! love, shaina

Name:: Debbie
Email:
Date:: 10/15/03
Time:: 03:15 PM

Comments

Hello out there!! No, I did not explode on Monday night but probably came darn close :) Sari, thankyou for your thoughts--it means alot to know that people agree with us and don't think we are off our rockers--or that I am off MY rocker--:) It's just that after dealing with such craziness for so long, you start to just take it and feel defeated all the time and it is so hard to talk about, because you hate complaining and you don't want to sound like the VICTIM all the time, but what else are we to do?? Someone very wise once told me, no matter what in life, DON'T EVER GIVE UP. You don't fail until you give up... I have never agreed more til now. As much as we may want to give up sometimes, we won't. And really, it isn't that hard, because all you have to do is look at Payton, let alone have a conversation (sort of:)) with him, and you're in--till the very end, you're in. I will keep you guys updated as to what goes on but our appt. is not until the 24th of October (I called the supervisor of the medicaid share cost program and left an urgent message on his voicemail with our predicament and asked if there would be ANY way that we could see him sooner since we will surely go without nursing if we are not seen til the 24th----he never returned my call) so I won't know much til then... SHAINA, we had such a good time at Jordan's party--she is really SUCH a cutie--you can tell she really adores Payton and that little Nemo doll was beyond cute--I hope someone had taped her giving it to him because that was just priceless... I also have to say that your family and friends are amazing--we felt so comfortable around everyone at the party and I mean it--most times we feel slightly uncomfortable at that kind of party esp. if Payton is wearing the bonnet the whole time and everyone was SOOO nice and friendly--just another kid at the party--and many said hi to him and introduced themselves to our family... We always feel welcome with you guys & we will definitely see you at the Walk/Run in November for Jacob!! --------I am going to school tonight and watching baseball later! GO MARLINS!! (& the Red Sox too!!) love Deb PS... HAPPY BIRTHDAY UNCLE JOHN!!!!!!!!!!!!!!!!!!!!!!!! HOPE YOU ARE FEELING BETTER!!!!!!!!!!!!!!!!!!!!!

Name:: tamara
Email:: tgatorbabe@aol.com
Date:: 10/15/03
Time:: 11:56 PM

Comments

deb, i just can't tell you how hard it is to hear all that you and rob have to endure on a daily basis...but please continue to lean on your family and friends and take the support that you can get...because PAYTON is certainly worth it!!! with all of our strength combined, i hope that you can always find the courage to fight (although you shouldn't have to)...besides working on the address labels, madison and i would be honored to help you and payton get around to your appointments...i could drive to your house and help you load up the stuff (i know it's not all as simple as that, but whatever you need)...and maybe i could even learn to take care of PAYTON like you and your mom do (atleast TRY!)madison and i could come over while you run your errands...i know it sounds ridiculous and i've been hesitant to offer, but think about it and let me know...i am always off on mondays and thursdays permanently from the outback so please take me up on the offer if necessary...i'm going to bed now, and by the way, GREAT MARLINS!!! i'll be calling you in the morning...love ya bye, tam

Name:: Debbie
Email:
Date:: 10/17/03
Time:: 02:35 PM

Comments

Hello wonderful friends and family--How are things?? :) Things are ok here--just waiting for our appt. next week--and moving right along with our day--THANK YOU Tamara for your offer! I will definitely take you up on it one day--esp. if Madison comes too!!!:) I am very fortunate to have friends and family that are willing to help me out but for the families or single moms who haven't left the house in half a decade--they just sort of disappear and their children are the ones to suffer.. That is just not right--things need to be changed--------Payton has been a real trooper at PT lately--almost seems to "like" it a little bit, which I would never had said for the past THREE years!! I think he just loves that swing!:) Well, have a great weekend everybody and MJ, we are hoping you feel better soon!!!!

Name:: Debbie
Email:
Date:: 10/18/03
Time:: 12:07 PM

Comments

Hello Hello Hello! Payton has had a new nurse twice this week, and we are both a little over tired--getting up 50 times in the middle of the night is not fun and Payton actually gets annoyed now! I think that he is so used to his regular girls, that he is not very welcoming to new girls. Esp. ones that are not like his favorites--I introduced him to someone new this week, and he actually CRIED--I have NEVER seen Payton cry when meeting someone--it was so strange--I was almost gonna turn around and say "ok, you can go now" But, I couldn't send her out just because he cried?? She came again and he seemed fine, maybe he was just fighting "change" or maybe he didn't like her hair-do--not really sure about that one---I am very excited to MAYBE be going to one of the world series games next week!! Rob is working very hard on getting tickets for one of the games!! I am keeping my fingers crossed--He is at work printing tons of shirts for the series, but I am curious about something--Right now, he is printing a shirt that says " New York Yankee Payroll--$156 million" on the front and directly underneath it "Florida Marlin Payroll--$52 million" and then on the back it says "florida Marlins winning the series--PRICELESS" What I am curious about is how is it ALLOWED that an organization is allowed to spend as much as they want on players, etc..?? Shouldn'tthere be cap so that ALL the teams have a chance to go to the world series?? I asked Rob this and he said that in football they do have a cap--each team can ONLY spend so much on salaries and after that too bad. SOO, why can a team like the Yankees buy all the good players and teams that can't afford $156 million just get what they can get?? If I played baseball and I didn't mind the weather, I guess I'd want to play for the Yankees--esp. if I had a family and needed a bigger paycheck.. NO WONDER the Yankees have 26 World Series rings.. They should probably have alot more seeing as how their bankroll pays for the best pick of the players. I always used to think that the Yankees just have the BEST ball players--not the most money. I guess that makes me naive. I just can't believe the fans put up with it. Have a great weekend everyone and GO MARLINS!!!!!!!!!!!!!! PS.. Thank you miss Ashley for Pay-Pays' new Halloween outfit--it is actually VERY CUTE--we are sending you something and those necklaces are in the pocket so be sure to look for them--hope you like it!! LOve, The Freeman Clan

Name:: MJ
Email:: TWEETYROLL88@aol.com
Date:: 10/25/03
Time:: 10:44 AM

Comments

Hey Payton: how are you doing? I hope you have been out shopping lately. I have only been to the doctor. :o( No fun at all for me! Tell your dad I love his tshirt about the yankees. Shh, don't tell anyone, but I live near NYC and don't like the Yankees! Go Florida!!!!!! HEE HEE! Hi! How are you? I still have a cold...:( Wyatt has been very good and cuddly! He actually has a new website! If you want check it out go to, www.freeweb.com/mj88 . He'll have a guest book soon so check back and let him know you have visited! Hugs to you, MJ & Wyatt www.caringbridge.org/ny/mjpurk www.our-sma-angels.com/Margaret

Name:: Debbie
Email:
Date:: 10/25/03
Time:: 12:07 PM

Comments

Hi out there--Hi MJ!! Payton has not been shopping since his Toys R Us Excursion but I am sure he will back out there soon--We are actually taking him to dinner tonight--so that should be exciting:) We are first going through the "appeals" process with SSI, before we go through the program at DCF that I had an appt. for yesterday--turns out that we MAY have a chance to get BACK IN the SSI program (don't ask, it is such a long and annoying process that I can't even listen to it myself)--I will know more on Monday and I will post the long drawn out version then. We can't apply to two different organizations for the same thing (medicaid) at the same time, so SSI first, and if that falls through, which they will do everything in their power to make happen, then we will go the Shared Cost route--We actually may have found where SSI made a mistake but wish us luck going anywhere with it--they seem to be pretty powerful and untouchable in a scary way. BUT, I will be there on Monday where I will find out the details of what is happening now and I will let you know--FUN FUN FUN. Payton has had a rough time lately--just very mucusy and he has been getting these plugs in the early mornings that sometimes completely block his airway and we are in a hairy situation for a few minutes--I think he may just need an extra neb treatment at night or maybe he is not feeling well and that is making his mucus really thick--Not sure about that but we are trying a couple different things to fix--He just recently got the new mask with the prongs that go into the nose (this looks kind of scary but is much easier on the patient because there is NO mask covering the face, so he gets to see much clearer, not to mention the pressure of the mask is completely alleviated, leaving his nose looking pretty darn good for the first time in what? A year??) HOWEVER< this mask seems to make for these horribly HARD & CRUSTY plugs that are IMPOSSIBLE to get out & then in the "getting them out" process Paytons' nose gets torn up (on the inside) and then it is very sensitive and/or bleeding and then he doesn't want the new mask (who could blame him) SOO, like everything else, it is good, but has its' share of problems too. (The prongs also fall out VERY easily so he could never wear to bed or anywhere out of the house because it would not be safe enough-) Well, have a great weekend everyone & GO MARLINS!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Name:: Annette Reed
Email:: reed.199@osu.edu
Date:: 10/26/03
Time:: 07:59 PM

Comments

Hi Debbie! I emailed you directly a few weeks ago- not sure if you got it or if you responded ,I didn't get it. I have been having email problems lately. Anyway, I just wanted to say I know what you are going through- keep fighting for Payton! You are doing an awesome job taking care of him. It is not fair that the government provides these services for the disabled but can't see that the best place for most of these kids is right in the home with their loving parents who need just a little bit of help/assistence to give them the best life possible. It is very difficult to take care of an SMA 1 child without some kind of financial assistence. I think most doctors give the advice to parents to "do nothing" because of this. But ,there are some of us who are willing to do ANYTHING to keep our children with us- including personal sacrifice. It is not about "us" anyway. * Madison says "HI" to Payton. She wants him to know that she is going to be Belle (in her red christmas dress) for Halloween. HUGS!

Name:: Jennifer
Email:: jp954@hotmail.com
Date:: 10/27/03
Time:: 09:11 AM

Comments

Hey Debbie. It's Jennifer. Sorry it has been a while since I have been on here. I had a job change- long story but I think it was for the better. I read myself up-to-date on here and I am disgusted with the fact that they could take SSI away from you. Ok, so you aren't poor people but do they not realize that you still have other expenses besides Payton that have to be paid every month?!? I wish you the best of luck on getting SSI or some other form of help back ASAP. I tell you Payton is the luckiest little boy in the world to have such wonderful parents as you and Rob. You really set an example of how parents should be and how they should give unconditional love. I really hope things get better. Rodd and I just hung out with Jamie Joy recently and we were all talking about how excited we were for next years benefit to roll around. Rodd and I should definitely be in a better financial situation next year to bid on some stuff and my new boss is very big into charities so things should be great. On another note, HOW BOUT THOSE MARLINS!! That was an awesome final game. Well I gotta go now bc work is about to open. I hope everything works out and I will talk to you soon. Say hi to Payton and Rob for us as well. Love, Jennifer

Name:: Debbie
Email:
Date:: 10/29/03
Time:: 12:44 AM

Comments

Hello Hello--Annette, I did email you back a while ago--I just figured you were busy--Do you happen to have the email you sent to me?? I don't even remember all of the info but i know I asked you a bunch of questions about nursing!!:) Please try to email me the original--THANKS for all of your support:) Hi Jenn!! (& Rodd too!!) You have to call me soon and let me know how things are going--I didn't even know you got a new job!! Thanks for all the support and encouragement--I can't pretend that this stuff doesn't get to me but--you do what you have to do--I guess people say that all the time--but it is true--OK--SO back to my SSI nightmare--I was hoping to have more information by now, but like everything else--NO. Turns out that the lady I need to talk to (because our case is SO detailed and SUCH a nightmare) is on some sort of three day absence and no one felt that it was important to tell me that until after going there twice this week--this probably doesn't surprise you and it definitely didn't surprise me...THING IS... I think that they made a mistake with our cancellation or in the way that they came to the decision to cancel--in our financials and tax returns in particular--and so far, they are not allowing me to state my case, point, whatever you want to call it--TO ANYONE. AND the lady who can listen or help or decide if they are going to take me seriously--is out of town til Thursday and won't be able to see me til Friday (& Of course I work Fri and won't be able to get there that day) THEY DID of course, offer to make an appointment with someone else for me on November 10 at 10am--I said oh, I can't get here that early because I can't leave my son--"oh, that is the best I can do hon"--we only do "those" appointments early as they can take hours to deal with--OH GOOD< BECAUSE I HAVE ALL THE TIME IN THE WORLD AND I HAVEN'T BEEN INCONVENIENCED ENOUGH--SO PLEASE, SCHEDULE ME AT YOUR CONVENIENCE... Of course, I just say ok, yeah, whatever, because god forbid you even slightly aggravate one of these evil people that want to see you suffer (not because they are bad people but because they are stuck working for years for this ridiculous organization that overworks and underpays them and it is just sob story after sob story and they have THEIR OWN PROBLEMS). ANYWAY--I have to wait til Friday or maybe even Monday to see if they are going to investigate what could very well be THEIR mistake and it will be a couple of weeks before the final decision on whether or not we get SSI.. is made. If we are not able to work with SSI, it will be off to some OTHER as horrible (or even MORE horrible--yes, it's true) organization to beg and plead for the help that our son is entitled to--CAN'T WAIT. I will update as I find out what is going on--Keep your fingers crossed--Hope everyone is doing well--Payton is good--he actually has been going a bit longer off the bipap here and there and he is SUCH a big boy when he does this--I know he is trying so hard--Lots going on--we are trying to find a place on the beach to have our next fundraiser and we are celebrating Halloween and Robs' bday this weekend--Payton is going to be Superman!:) Well, have a great week everybody--XOXO PS>... We want to wish Miss Lauren Ackerman a belated HAPPY 21ST BIRTHDAY--You are getting SO OLD!!!:) We love you!!

Name:: Tracy and Skylar
Email:: ourlilsky@aol.com
Date:: 10/29/03
Time:: 10:58 PM

Comments

Hi there! We hope you have a GREAT Halloween! What are you going to be? Skylar is going to be Nalah from the Lion King. She loves that movie. Be safe and have fun. (((hugs))) from Pa

Name:: Meghan Vesey
Email:: mrosevesey@icqmail.com
Date:: 10/30/03
Time:: 08:44 AM

Comments

Hey Debbie, I was just writing because I have a few questions about the scrap booking thing. I hope to do the 9-4 spot, but my volleyball team is in playoffs, and from this point forward it is single elimination, but if we don't lose I wont be able to be there until after practice (at 12) on Saturday. Would that be ok? See I would change it to the evening spot, but I have to baby-sit at 6:30, so I'm in sort of a dilemma, what should I do? Have a wonderful and safe Halloween; I am sure Payton looks like such a stud in his Superman Costume. With Love, Meg

Name:: Dionne Ryff
Email:: dryff@alliedadvpub.com
Date:: 10/30/03
Time:: 03:01 PM

Comments

Meg - The times for the scrapbook event are flexible. Feel free to show up at whatever times best accomodate your schedule!!! Sadly, as of now, we don't really have too many people participating, so the more, the merrier!!! You can also call me directly if you have any questions - (954) 229-9030 x10. It's going to be a lot of fun! Lots of cool prizes too!! I've got my fingers crossed that more people will sign up at the last minute...I know Debbie is planning to participate for 1/2 day as well!

Name:: Debbie
Email:
Date:: 10/31/03
Time:: 01:10 PM

Comments

Hi out there!!! FIRST FIRST FIRST, I must wish my wonderful husband a VERY HAPPY 36TH BIRTHDAY TODAY!!! We are celebrating Halloween and Robs bday tonight and tomorrow night too!! Payton is going to be Superman tonight and mommy is a nurse--I have to work for the first half of the night and then we will be at my moms celebrating--This Sunday is our anniversary so we have a busy weekend--HI TRACY AND SKYLAR!!! HAPPY HALLOWEEN TO YOU!! Payton sends you big hugs Skylar!! Meghan, I know that you can come whenever you want, just give me a buzz if you have any questions or email & you can also call Dionne for info--it will be super fun, so for those of you out there that are not sure--COME ON OUT!! We will have a great day and there will be tons of food, prizes, cool scrapbooking supplies and ideas!!! We will be taking pics and making memories all while raising lots of funds for research for sma!!!!! Talk soon, LOVE DEB:) PS.. Also, Happy Birthday to Karen! & to Tara too!!! Any other Halloweenie birthdays out there???:)

Name:: Marni
Email:: MRW@SEGUEHEALTH.COM
Date:: 10/31/03
Time:: 04:45 PM

Comments

Happy Halloween to the Freeman Fam and Happy Birthday to Robert!!! I love you all very much and I am sending all of you BIG hugs and BIG kisses!! Lots of love, Marni XOXOXOXO

Name:: Heather Beyer
Email:: heat1210@bellsouth.net
Date:: 10/31/03
Time:: 04:54 PM

Comments

Hi Debbie, Rob, and Payton, Happy Halloween! Stay away from the kriptonite, Superman! Lots of Love, Heather

Name:: Debbie
Email:
Date:: 11/02/03
Time:: 05:23 PM

Comments

Hello out there--HI MARNI AND HEATHER!!! Lots of love to you guys!! Well, we had a very nice weekend and today ROb and I are celebrating our ANNIVERSARY!! We celebrated by staying at the Diplomat in Hollywood last night--the room was spectacular-the view was spectacular and the whole day was spectacular!! It was very strange when we first checked in because one of the girls that was working there (at check in) was one of the girls that was on the show "Paradise Hotel" For those of you that do not know, this was a reality show this summer that Rob and I RELIGIOUSLY watched--it was cheesy but entertaining--Well, for those of you that DO know, Amanda (not the host but the girl that was sort of with Beau at first and then got kicked off) works at the Diplomat in Hollywood!! I didn't say anything at check in but she was all by herself when we were checking out so I told her that we were fans, and that we loved her on the show--and she said thanks! and I also said that we didn't like Toni--and she said "nobody does.." It was pretty cool--But, no where near as exciting as our stay in that hotel--if you are looking for somewhere grand to stay, I would definitely recommend it--Maybe one day we will have the benefit there!!!:) Payton is talking up a storm and I miss him terribly so I am going to go and hang with my son--Have a great week everybody!! Ps.. Thank you to all that celebrated Robs' bday with us!! We had a great time!!!:)

Name:: Phyllis Beresin
Email:: phyllisberesin@earthlink.net
Date:: 11/02/03
Time:: 10:45 PM

Comments

Dear Debbie and Rob - You are incredible parents and I am just so thankful to have read in your journal that Payton is gaining weight and learning new skills, like swinging on his special swing and clicking to indicate choices. He is obviously not only a beautiful child, but also a very bright and courageous one. I have been out of touch since last February, but I want you to know that my thoughts and prayers are always with you. Working to keep Payton alive and as strong as possible, and striving to raise money for a search for a cure for SMA are what makes your love for your son a tangible form of your devotion. You not only talk the talk, but you walk the walk - 200%. You are an inspiration to everyone who knows you. Keep up the great work and may G-d help the doctors and research scientists to find the answer to your prayers. Love to you all, Phyllis

Name:: MJ
Email:: TWEETYROLL88@aol.com
Date:: 11/03/03
Time:: 10:29 AM

Comments

Hi! How are you? How was your Halloween? Mine was pretty boring. We didn't have many trick-or-treaters here. Wyatt didn't enjoy Halloween very much...He barked and barked at everybody who came. Wyatt says I ruv yoou...That means I love you...I hope your doing well! Hugs, MJ & Wyatt http://www.caringbridge.com/ny/mjpurk PS. Can't wait to see a picture of your costume!!!! I need a new picture of you for my clock!!!! Love you!!!!!

Name:: Michael Murphy
Email:: MurphDog0352@aol.com
Date:: 11/04/03
Time:: 10:33 AM

Comments

Hey Miss Deb,Rob(old man) and Superman, Havent signed in a while so i decided to drop a quick one. Hope all is going well besides the whole nursing issue.I say pretty soon you just go postal style Deb, I got your back.I can believe out of all the costumes you were a nurse, would have been thelast thing i thougtht you wouldve been with all the crap you go through with nursing.Well besides that hope all is well and maybe one of these days well actually talk on the phone, i swear we have the longest running game of phone tag inthe world.Take care guys. Micael Murphy. P.S. does Robs old ass get the senior citizen discount at the movie theatres yet??

Name:: Sue O'Neill
Email:: caseyandcolinsmom@yahoo.com
Date:: 11/05/03
Time:: 02:16 AM

Comments

Hi Debbie, Hope this note finds you all doing well. We're doing well up here in Vermont. Guess what?! We are coming to SeaWorld and Disney for Casey's (almost 7, trach and vent) Make A Wish! He has always been fascinated by whales and dolphins and would be so thrilled to touch a whale and feed one like Jesse in Free Willy (FAVORITE movie!). We will be staying at Give Kids the World, which I hear is as much fun as going to the parks! Any chance you can visit with us??? We'd love to meet Payton!! We are coming by RV and are checking into GKTW on December 3rd. Well....what do you think???!!!~~Sue~~

Name:: Deb
Email:
Date:: 11/05/03
Time:: 02:12 PM

Comments

Hello out there!!! Hi Phyllis! Thank you so much for your kind words--it makes me feel stronger when I hear encouraging things like that, which believe me, helps quite a bit! MICHAEL!! How are you?? Howz the job?? Yes, ROb is getting OLD--he is definitely starting to feel it too--I know about the nurse costume, but I figured since I would be able to use the outfit one day for work, it would be more of an investment!!! We must see you soon--let me know if you are up to anything special for the holidays!!:)

Name:: Debbie
Email:
Date:: 11/06/03
Time:: 12:37 PM

Comments

HI out there--I sent only half my journal message yesterday--SUE, Unfortunately we would not be able to visit with you--Orlando is about 3 hours (at 90 miles an hour) from here and it is a HUGE project (I am sure you can imagine) to get to Orlando--We do however, go to Orlando with Payton at least once a year, sometimes twice--but I think we are going in February or even late January this next year--I have heard really great things about GIve Kids the World!! Casey will have a BLAST!! HE will have SO much fun at Disney too--If you guys come back next year, you have to email me and let me know and we can coordinate a visit at the same time--we know all the best "handicapped friendly" places in Disney and the best way to enjoy Disney with handicapped needs--and we would LOVE to be there with another sma family!!! The slowest time at Disney is usually late Jan-early Feb and we like to go when it is at its' slowest!!! Please tell Casey (is COlin going too??) and Colin to have a GREAT TIME!!!! and that we are sorry that we can't be there!! If you are thinking about going to any of the other parks--I would take them to MGM--Epcot & Animal Kingdom are fun, but no where near as good as MGM!! ~~~~~~~~~ I had an appt. at SSI yesterday--I had called for some information and the "nice" lady upped my appt. knowing how difficult it would be to get there next Monday at 10am with Payton--so I had my appt. yesterday at 2:30pm and the lady that is in charge of reconsiderations went through our nightmare files and was extremely nice to me--she called our accountant and really tried to figure things out--and then she said that she would have to go over a few things and let me know if we were "in" or "out" so we are waiting on the edge of our seat for the answer--please keep us in your prayers or thoughts or do a little prayer dance like I did!! Anything will help!! Payton is feeling kinda yucky the past two days--just probably with the weather being so bad, he is very clogged and we are coughing a bit more to get that mucus OUT. He looks very healthy weight wise though and his double chin is hilarious! His legs have really thickened out and we tell him that he looks VERY HANDSOME and like a BIG BOY and just loves that--I say "are you my big boy?" and he say, very clearly "uh-huh" He LOVES saying uh-huh and no is more like a bad facial expression than anything else--We are looking forward to the "Crop for a Cure" this weekend and next weekend Jacob Rappoports Walk/Run for a Cure(the 15th of Nov) so if you are able to come out we would LOVE to see you there!! Cropping hours are very flexible, so if you can only come out for a few hours or at a certain time, just come when you can! Email me if you have any questions or need directions to either event--LOVE deb

Name:: Big AL
Email:: alz@firstathealthcare.com
Date:: 11/07/03
Time:: 09:09 AM

Comments

The Robert O. Law foundation meets the first week of dec. every year to give away money to grants and proposals submitted by non-profits in the florida area. Debbie, please contact the foundation at 2120 E. 21 street ft. lauderdale Fl. 33305 with what you would do with $500,000.00. Good Luck, AL

Name:: shaina
Email:: shaina@ourshootingstar.com
Date:: 11/07/03
Time:: 07:44 PM

Comments

hi deb- can't wait to see you next weekend. just a note that "jacob's run, walk & roll to cure sma" is sunday, nov. 16th (i noticed that you had it as the 15th). at quiet waters park. shaina

Name:: tamara
Email:: tgatorbabe@aol.com
Date:: 11/08/03
Time:: 02:05 AM

Comments

deb...glad to hear that you and rob had a GREAT birthday and anniversary celebration...you two certainly deserve it:)...sorry we had to miss it, but i know you understand...i mailed you a sample of the donation letter i'd like to send out...i'm having trouble folding the address labels in a neatly manner and it adds extra postage which is why i suggested omitting it this time out, but you know i'll do whatever you want...i have the 1000 names so please call me ASAP so i can get started printing...lori said all the ssi "stuff" is pretty panned out, sorry you had to go through so much B#!#S#!#! anyway, next year our goal can be to work on all the "administrative stuff" for all the healthcare issues and start working on changing the legislation...i have maria's number so i'll call on monday and talk to her about the letter to the hotels and will start typing next week...glad to hear that my daughter isn't the only chubby kid in town and the payton is keeping her company...we ALL have a lot to be thankful for this year!!!!! i'm extremely intrigued about the $500k awarded on the prior email, so PLEASE let me know if i can put together something on papter to help you submit for the $$$$...that would just be a blessing...hugs and kisses to payton, tamara

Name:: Debbie
Email:
Date:: 11/08/03
Time:: 11:35 AM

Comments

Heylo out there--Thanks for the info on the grant Al--we will definitely send them a proposal/I appreciate the "heads up" on that!!--Every penny counts towards a cure-Tamara I would love help writing it up--I have a sample proposal letter that I can give to you for starters and I will email you with the tidbits that it should probably start off with-- I can't wait to see the label letters!! I am looking in my mail box anxiously!!:) Someone mentioned to me the Elks Lodge?? For an event?? Not sure where that is, or if it is what we are looking for, but comments or suggestions would be helpful--Hotels are perfect but not likely to allow us to use our own food (Outback) and also not likely to want to even discount a HUGE room when they rent those rooms on the beach in June FOR THOUSANDS for weddings--It doesn't neccessarily HAVE to be a HOTEL--they are just VERY nice and ideally what we will have the benefit in as we get bigger--I kinda wanted to start doing it in a hotel this year, but it may be next year, if we have troubles with reserving it--Does anyone know a place in Fort Lauderdale that could accomodate 400 people in semi-formal dresses and suits?? Well, I am open to any ideas/suggestions--We must have this reserved fairly soon because we are trying to have the event a bit early next year (like in May or maybe even late April) because of scheduling issues for football players and the vacation/wedding plans that often coincide with our affair--Middle of May would be ideal--but we are still working on a date--The swimming hall of fame is awesome and perfect really, but just TOO SMALL. It really seems to be more for like 200 people than 400. We are still waiting on the FINAL ANSWER from SSI, so keep your toes crossed still--THANK YOU TO ALL THAT ARE ACTUALLY DOING SO!! And Payton seems to be feeling great and TALKING like crazy--it is funny how much your kids take after you--I can just imagine what he is actually trying to say most of the time--TODAY is the crop over at the SCRAPBOOK DEN!! I will be going over there as soon as my mom gets here this afternoon and will probably be there for a few hours--if anyone is looking for something to do today-it is quite FUN to CROP!!:) All of the proceeds will go to FSMA, which go to research for a CURE for SMA!! It sometimes feels so out of reach, but I KNOW that we will SEE A CURE FOR THIS DISEASE!! THANKS TO ALL OF YOU!! HAVE A GREAT WEEKEND EVERYBODY!!

Name:: Debbie
Email:
Date:: 11/08/03
Time:: 11:46 PM

Comments

I just had to come on and THANK Dionne for putting on such a great event with the scrapbook Den--THE CROP FOR A CURE was awesome and TIME FLEW BY!! I had so much fun and it was quite relaxing and nice to just be able to crop all day--I was there from 1:30 til about 11pm and it felt like a few hours--I will definitely be back--I can see where cropping is like an addiction and with each page you crop, you get more and more hooked--NOT A CHEAP HOBBY!! Well, thanks to all of you that went and to the scrapbook den for being such wonderful hosts, and to OUTBACK and MARIA!! For donating the food and for bringing it to the event--there were many other people involved and donors too---THANKS TO EVERYBODY that is helping us find a cure--We really do appreciate it--Love Love Love--The Freemans

Name:: Debbie
Email:
Date:: 11/10/03
Time:: 12:13 AM

Comments

Just got home from work a bit ago--We were busy:) I wanted to let everyone know that the walk next week is ON SUNDAY!! I did mess up and write the wrong date and I want you all to try and be there, so November 16, at Quiet Waters Park--GET THERE EARLY!!!:) It will be fun! Dionne, you have to let me know how the crop went and let me know when the next one is going to be!! I had so much fun, I was dreaming about cropping last night! :0 I know--I know--Got to go to bed--Have a great week everybody--Love Deb

Name:: Dionne Ryff
Email:: dryff@alliedadvpub.com
Date:: 11/10/03
Time:: 03:49 PM

Comments

Hey Deb! The crop went awesome! When all is said and done, we should have made around $2,000 for FSMA to find a cure. From the feedback that I got, everyone who participated had an excellent time and said that this was the BEST crop they had ever been too (& there were some pretty expreienced croppers there!) So I am inspired to put together the 3rd Annual Crop For A Cure...next year!! And hopefully word will get out on what a great time this crop is (and so many prizes and giveaways) and we will have more participants and raise lots more $$$!!!! Thank you again for coming out to support the event and for talking it up to your friends and on your website!! And big kisses to Maria Giles and Outback Steakhouse for donating such a wonderful dinner for the croppers! And to the Scrapbook Den for letting us take over the crop room all day and night! And to Lisa Yost, Massage Therapist, for stopping by to give us some much needed cropping relief!!! That rocked! If anyone needs a home massage therapist, she's the one to call! (954) 854-6371. Looking forward to Jacob's Walk next Sunday! Hopefully it will be a beautiful day for some exercise, fundraising and fun!!! My whole family will be there to help raise $ to find a cure - for Zeke, Payton and the zillions of other kids who suffer from this terrible disease.

Name:: Lisa Yost
Email:: lisayost_lmt@bellsouth.net
Date:: 11/10/03
Time:: 03:58 PM

Comments

I just wanted to say that it was such a pleasure to help out for such a worthy cause.....please let me know if you ever need me again. ;o) Lisa Yost

Name:: Dionne Ryff
Email:: dryff@alliedadvpub.com
Date:: 11/10/03
Time:: 04:02 PM

Comments

PS -- Meg - it was GREAT to see you at the crop too! And congrats to your Douglas Volleyball Team for making it to Regional Champs!!(?)!! And thanks to Susan, Brandi, Coreen, Shawnda, Terri, Michelle, Sue and Jamie for getting donations and coming out to participate!!!

Name:: Debbie
Email:
Date:: 11/12/03
Time:: 12:03 PM

Comments

Hello out there--Dionne, it was such a pleasure to be at the crop for a cure benefit--I can't believe how much fun I had and I have been passing the word around for others to get into the scrapbooking mode!! Next year, I think I will have to be there at 9am!!! :)CONGRATULATIONS on all of the funds raised for a cure!! You worked really hard to make that happen and all of us SMA moms, dads and kids appreciate everything you do all YEAR LONG!! PS>> You need new trivia cards next year--yours were too obscure!! How about 80's trivia!! That would be perfect!!:) Andrea, if you are out there, I did not forget about you!! I have not heard from that station yet, but I am waiting and all my phones are on and ready to go--if they want to email me they can do that too--I would love it if you could work on another centerpiece for this years' function--Since you picked out the most FABULOUS piece for last year, I figure you have the eyes for what will work best--You know we sold every single one of those pieces--everybody couldn't get enough of them!! Let me know how things are going and if you need anything from me, like a letter or whatever--Well, we are taking Payton to the doc tomorrow and hopefully he will have gained just a bit more weight--he is talking like crazy and I am really looking forward to getting him into the Nova program--Nova is not covered by ins. or medicaid so it is expensive for families to bring their children there, but from what I have heard they have the most up to date, newest technology for speech and alternative communications, etc.. SO, I will let you know how that progresses-- Talk soon~~~~Love Deb

Name:: tamara
Email:: tgatorbabe@aol.com
Date:: 11/13/03
Time:: 10:52 PM

Comments

dear deb, loved the visit today and must make that happen much more often.......but i promise to visit the grocery store beforehand (you cannot live on diet coke alone......lol)...payton is looking great and hope all the chaos with the babies didn't upset him too much...i just can't tell you how much i love that little guy......i looked into his eyes today and he is such a fighter....i didn't say anything earlier, but i JUST KNOW that he knew EXACTLY what was going on and that lori and i (and the kids) were there to show support for you and him....he knows that we are NOT going to give up on him or finding a cure..............SO PAYTON, WE LOVED HEARING YOU TALK AND THANKS FOR THE "WAVE" GOOD-BYE..........you are an inspiration for everyone.....LOVE THE PADGETT'S (TAMARA, RAFE AND MADISON)

Name:: Debbie
Email:
Date:: 11/14/03
Time:: 11:47 AM

Comments

Hi Out There~~ Tamara, it was awesome to have you guys over--Payton and I never get to eat lunch with our friends so it was really nice to do that--Plus it is great to see all the kids and I know that Payton enjoys visitors--He likes to check out the scene, see what is going on, make a few comments--and chill where he is at--Madison was beyond cute with that little louis vuitton purse, I should have taken pics with Payton and Madison and Payton and Brody but I didn't think of it til you guys had already left! Next time~~:) I am looking forward to the benefit next year, I have a luncheon tomorrow with Kellys' grandmas' group--(I am forgetting the name Kel!) but anyway, it is a group with her church I believe and I am going to speak about sma tomorrow and hopefully spread as much awareness about this disease as possible!! Wish us luck! I must go to work and get prepared for tomorrow-so I must go, but have a GREAT weekend everybody!:)

Name:: Meg
Email:: mrosevesey@icqmail.com
Date:: 11/17/03
Time:: 12:52 PM

Comments

Debbie~ Hey, I hope all is going well with everyone. I had a great time at the scrap booking-a-thon, and time really did fly by. I think that you guys should look at the Broward County Convention Center for the Benefit for May, but if you decide on that it should be booked soon, b/c of proms, etc. I was also wondering about the run/walk for next week. I know that it is on Sunday at Quiet Waters Park, but has the registration date already passed? Just email me back whenever you get a chance. Thanks, Meghan Vesey

Name:: Debbie
Email:
Date:: 11/17/03
Time:: 03:57 PM

Comments

Hi everybody!! WOW!! What a fantastic day yesterday was!! The first annual walk, run, roll for a cure in memory of Jacob Rappoport was AMAZING!! Kelly and I aren't sure of our 2 mile times but I don't think we broke any records!! :) I don't think I have ever seen more activities for kids in one place--the food was sprawling--bags and bags of bagels, donuts, fresh fruit, Huge muffins, fresh orange juice, water, etc.. there were kids everywhere--there must have been over a hundred kids there and they had face painting and a petting zoo and a gymnastics bus--the best part for me was watching the children watch the "pop stars" dancers--they were amazing but if you could see the children watching in awe--it was quite overwhelming to say the least--there were many sma families and the 2 mile run was lined with blown up pictures of many of our children (including Payton!!) I had the greatest time and I believe they have raised over FIFTY THOUSAND DOLLARS!! for sma research!! That is so huge and so much work goes into what they did yesterday & I just want to thank the Rappoports for always being so kind and generous and just plain good people--for continuing to fight sma the way that they have even with all of the pain & suffering involved with what they have lost--They have set such a wonderful example of how to not let sma beat you and your family and how to make a difference in the lives of THOUSANDS of others--I feel very honored to be in the company of so many great families--the circumstances of our meeting may be very unfortunate for all of us, but I know we are better people for having been through all of this and for having known all of YOU--Have a great week everybody--

Name:: shaina
Email:: shaina@ourshootingstar.com
Date:: 11/19/03
Time:: 07:22 PM

Comments

hi debbie- thank you for your beautiful message and for supporting us on sunday. and thanks to rob for helping us with the shirts- they came out great!!! and especially thanks to payton for continuing to fight sma. he is a true hero. hopefully next year jacob can get the weather down to about 70 degrees so that payton can come roll!!!!! we love you guys!!!!

Name:: Debbie
Email:
Date:: 11/20/03
Time:: 11:31 AM

Comments

Hi everybody!! Meghan, you had the date wrong!! It was actually going on while you were emailing!! They will definitely have a walk/run/crawl event each year, so you must go next year!! Hopefully Payton will be able to go too!! Shaina, if it is that cool out next year, Payton will be there for sure!! We had a really really good time--& can't wait for next year!! Megan, the broward county convention center is a good option--I will look into that--THANKS! We are going to therapy, etc.. things have been hectic--Payton is doing well--He actually loved the movie Sinbad and I think it just came out so we are going to pick that up and see if we can wear out a NEW movie for a while!!!!

Name:: AMY (RATKOWSKI)RONZIO
Email:: ANTHONYRONZIO9590@MSN.COM
Date:: 11/20/03
Time:: 10:47 PM

Comments

DEBBIE, AS THE HOLIDAYS APPROACH I JUST WANT YOU TO KNOW WE'RE THINKING OF YOUR FAMILY AND PAYTON. GIVE HIM A HUG FROM ME. HOW'S PAYTON COMING ALONG? WE HAVEN'T REALLY HAD THE CHANCE TO TALK MUCH. HOPE ALL IS GOING WELL. TAKE CARE AND GIVE HIM A KISS FROM US AS WELL. BY THE WAY HOW'S TEAH DOING? AND LEAH PARENTS? KEEP IN TOUCH AMY

Name:: Debbie
Email:
Date:: 11/21/03
Time:: 10:57 AM

Comments

Hi out there!! I would like to thank the COLUMBIETTES of Margate and the other cities that attended the luncheon last week where they raised $1000.00!! for Paytons Pals!!! It was quite an honor to be their chosen charity this year and I really had SUCH a good time with everyone at lunch--THe RAFFLE was incredible and I even won a door prize!!! I spoke on behalf of our organization and broke down a bit (there were well over 100 women there) and I felt like I was among family--not strangers, but aunts and grandmas and people who really care about our children--it was AMAZING!! I wanted to thank Kelly, Lucille, and all of their family members for all of the hard work that went into that lunch & for choosing Paytons Pals as your beneficiary--We are now even CLOSER to a cure!! ~~~~~~~~~~~~Amy, it is so good to hear from you--yes, I know we always go way too long without talking! Please say hi to Anthony and Brad and Brooke for me!! I will let you know when/where, etc.. for the benefit this year as soon as I know & I can't wait to see you guys! Kelly says that you are planning on having a baby!!!:) Teah is doing ok, Leahs' parents are doing ok--under the circumstances anyway, thank God they have each other. It is a really bad and tragic thing to have happened and little Teah is only 6 years old--she is very sophisticated for her age, but she has basically lost both parents as of last October--I am in the middle of making a scrapbook for Teah with tons of pics of Leah from years and years ago to the present--it is coming out really nice and I am sending it to Teah for xmas--I hope it is something she will cherish forever--Well, once again another week has flown by--It is amazing how fast it goes--Have a great weekend everyone and Meghan if you are out there (DIonne too!) I think Jen and I are going "cropping" this weekend if you want to stop by!!:) Love, Deb

Name:: Debbie
Email:
Date:: 11/23/03
Time:: 11:55 AM

Comments

Hello everybody!! Well, my scrapbooking for Teah is really coming along--I can't tell you the euphoria of being in the "den" with all those supplies at your fingertips and a big table where you can get to business with your "craft!" It is quite exciting--I just love doing it and esp. doing it for Teah! Jen is actually getting to be quite a cropper herself!!! Hayden & Max's FIRST soccer game was a complete success although I don't think they won the game--Max was quite the goalie, lunging for the ball and tackling people--Hayden was running all over the field, always making sure to look back and give the big thumbs up to Max, who was rooting him on from the sidelines!! It was TOO CUTE and we will definitely be going to more of those games to check out the action!! The water was good too Lor!!!:):) Anyway, work is getting busy again--thank goodness--cooler weather and the feel of the holiday brings everybody out and mostly in a good mood!!! Hopefully we will be super busy tonight and right on up til xmas!! We are having Thanksgiving dinner at my house with my g-ma from Ohio and my parents--if anyone wants to stop by this weekend or see Payton please give me a call--we will be here all day Wed/Thurs/& Friday and Sat. too--Payton just got SINBAD, which he has already seen a ton of times this weekend and he LOVES IT!! I am soooo Thrilled, it is quite exciting when he finds a new movie that he likes!!! :) Well, Have a great Sunday everyone!! Love, Deb

Name:: Debbie
Email:
Date:: 11/25/03
Time:: 05:46 PM

Comments

Heylo out there! We went to WPB today to see Paytons favorite doctor and get Paytons' favorite shot--He was NOT happy today--we did, however, find out that Payton now weighs a whopping NINETEEN pounds!! Yes, we could not even believe it ourselves--it was quite impressive--he is turning into a giant--hee hee--He was not thrilled to be there and was not happy until we left and we were there for quite a while--he LOVES the car ride but that is about it when it come to WPB--I was soo proud that he has gotten so big so fast!! I just hope that he is able to handle the weight respiratory-wise as it definitely affects his ability to breathe on his own, etc.. We are trying very hard to wean Payton off the bipap and it is beyond difficult--i don't blame him either--if I was used to breathing great all the time and then I was pretty much gasping for air--I would choose bipap too--so that is our current project/priority along with everything else--Some of the national SMA organizations are coming together to call for "National SMA Day" on 4/4/04 --We are definitely going to plan something for that day--not sure what yet, but even if it is just a BBQ or something, we will celebrate with the rest of the world, as we come even CLOSER to a CURE!!!! We need your help and ideas folks so let me know if you think of anything that would help!!! I am going to be quite busy planning the event for this spring so if anyone would like to volunteer, let me know & also if your address has changed or if you know someone I should contact for help, etc etc etc.. let me know as soon as you know!! THANKS FOR ALL THE HELP EVERYONE!! I could NEVER do all the things that we do, without a team effort and group participation--It is coming together and sharing what we know and sometimes "who" we know that makes these fundraisers a success--I/Payton/ALL the children with SMA and our helpers--need all the help we can get!! We are celebrating our 13th year of being open next week at my work--We are having a huge gathering to celebrate!!--Outback has been around for 15 years now, & I have been employed by them for OVER ELEVEN YEARS!! I cannot say enough about how much they have gotten involved as a whole in what we do at Paytons Pals and how much they have taken a personal interest in me(& Payton) as a long-time totally dedicated employee--I may not have gone into management like originally expected (because I cannot work all those hours and still be able to take care of Payton) but they have not skipped a beat in getting involved--in TRULY caring--in their donations of not just food & beverage but in their TIME and all of the volunteers that have helped through Outback over the last three years--If you are not sure where you are going to eat anytime soon, OUTBACK is not just amazing food & service, they REALLY DO care about their employees and they GIVE BACK to the community in HUGE ways--:) I could go on & on & on about stories in which they have stepped up to the plate and taken care of an Outbacker in need but I really just wanted to say Thanks Bill, Maria, Casey, Ben, Lori, Tim, Chris & Bob--You have been so amazing to me & to our fight against sma and I am very proud to be an Outbacker!! Happy Anniversary!!

Name:: Debbie
Email:
Date:: 11/25/03
Time:: 05:48 PM

Comments

PS.. My email is totally not working so if you have written to me with no response, I am sorry but I am unable to email anybody and I will let you know when it is back in order--just call me on the Paytons Pals HOTLINE if you need me!!:) 954-935-6025 NO SOLICITORS PLEASE!!!!!!

Name:: tamara
Email:: tgatorbabe@aol.com
Date:: 11/26/03
Time:: 02:05 AM

Comments

hey deb, so much happens so fast, it's amazing how much i miss in just a few weeks.............i'm so HAPPY to see that payton is gaining weight, he might just give madison a run for her money (on the whole chubbiness issue :))....anyway, i'm still working on the mailings and hope to be done soon..it's a lot of work and is just taking me longer than expected.......i'm dissappointed not to have them done by thanksgiving, but SOON!!!!!!!!!! i will definitely not miss the RUN next year and look forward to the much needed physical training on my part........work is busy and yes, it's awesome......i too am very proud to work for the outback as it has allowed me time to spend with madison and still make a living..........after a tragic loss of a proprietor (from detroit) and her parents a few weeks ago, did you know that the OUTBACK TRUST bought 22 tickets for her store employees to fly down and attend her funeral????? that's pretty amazing!!!!!!! the following is the website for the convention center (http://www.ftlauderdalecc.com/main.html and i think it would be amazing to have the benefit there...there's alot of info to read and stuff that maria might be helpful with, but it's worth a try...do you have a copy of past letters that maria might have sent to nova or the swimming hall of fame? this way i'd have something to go by when writing a proposal letter for you to look at? let me know what else you need................ HAPPY THANKSGIVING AND ALL OUR LOVE, THE PADGETT'S

Name:: Debbie
Email:
Date:: 11/27/03
Time:: 01:33 PM

Comments

HAPPY THANKSGIVING EVERYBODY!!! Hopefully everyone is filling up with turkey and stuffing and mashed potatoes!! We are cooking at my house (actually my mom is cooking--& I am helping her a bit:)) but anyway, my parents and grandma Helen are coming over and we will be feasting ALL day--I am sure I will be in pain later but it is all good:) Payton is doing great (yes, Tamara I think he will soon be as big as Madison:)) He looks great with his new weight gain I must say!! Well, hope all you shoppers out there don't get trampled tomorrow--I never can deal with the massive crowds so I will be at HOME, but Good luck to those that take the challenge! & I hope you get GREAT deals!! Well, that is it--go DOLPHINS and Happy Thanksgiving to all--

Name:: Debbie
Email:
Date:: 12/01/03
Time:: 12:17 PM

Comments

Hi everybody!! I was getting about 50 or so spam emails a day--which was getting a little tiresome to have to delete and it was also crowding my email box like crazy, so if you email me from now on, email to: pjf714@msn.com easier, better, happier. Payton was OFF the bipap for a miraculous 5 and 1/2 hours yesterday--for those that don't understand--THIS IS HUGE--so we are very thrilled about that and hopefully this trend will continue--it has been MONTHS since he was able to breathe for any real length of time off the bipap--Well, we are in talks of having a garage sale right after Christmas to help pay for donation letters, printing, postage, etc... for the benefit in the spring, so if you have ANY junk please drop it to me at home, or with Rob at work! THANKS guys!! If you have furniture or anything big, let me know soon so I can make plans for pick up!! Have a great week everyone:)

Name:: LAUREN
Email:: DORDOR19@AOL.COM
Date:: 12/03/03
Time:: 08:48 PM

Comments

HEY PAYTON, DEB, AND ROB- I JUST WANTED TO THANK YOU GUYS FOR MY BIRTHDAY PRESENT. ITS AWESOME. HOPE TO SEE YOU SOON. LOVE ALWAYS, LAUREN

Name:: Debbie
Email:
Date:: 12/05/03
Time:: 11:58 AM

Comments

HI Lauren!! You are so welcome! I am glad you like it!!! All is fine here, preparing for the holidays and we are even starting to prepare for Disney!!! I am still working on a venue for