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