His birthdays are very special as most children with Taybi-Linder Syndrome die before their 1st birthday. Sophia almost made it to her 4th birthday. She was the 5th oldest child with this syndrome (of the 34 reported cases throughout the world since it was identified in 1968). The oldest was 6.
We are having a birthday party for him at 2 p.m. on Sunday, Jan. 17. Let us know if you'd like to come.
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Hi! My name is Sarah and I'm a long-time follower of your blog but a first-time commenter. I'm a college student who works with special needs kids. I also follow more than 200 blogs, and I'm sending a very special message to all the blogs I follow: YOU have the chance to be part of a miracle!
ReplyDeleteIf you are a member of Facebook or know someone who is, please take the chance to do something incredible!
Chase Community Giving is awarding $1 million to 5 charities! The Gwendolyn Strong Foundation is working to find a cure for Spinal Muscular Atrophy - and they could use the money!
Fast Facts:
- SMA is the #1 genetic killer of infants under the age of 2
- 50% of those diagnosed will not live to see their 2nd birthday
- kids with SMA lose the ability to sit, stand, walk, talk, eat, swallow, and breathe
- 1 in 40 people is a carrier
- the National Institute of Health says that SMA is the #1 CURABLE disease if given research funding
- SMA is considered a "gateway" disease and finding a cure for it could cure other neurological disorders
- right now there is NO cure and NO treatment
Want to change that? Vote for the Gwendolyn Strong Foundation on the Chase Community Giving app on Facebook! You have five votes to tell the world that you want a CURE for SMA!
Tell your friends and blog contacts - let them know they could be part of a MIRACLE - be part of a CURE - and give these kids a FUTURE!
Thank you!
Dear Ambrose,
ReplyDeleteI wanted to wish you a wonderful second birthday!!! You don't know me, but your blog brings me joy, and I am always happy to read about your progress and great accomplishments. Happy Birthday!!!
Willow and Angel Talia