Welcome to Allyson's website. (this is the same story in Caringbridge- we will be changing it to more details soon...
"My Story" section will tell you a little about me, my family, and SMA. Be sure to read the latest in the My Updates, where all updates will be made, view the photos, and PLEASE sign the guestbook so we know you visited!
My Auntie Sandi set up this web-site so we can keep you updated on my disease, Spinal Muscular Atrophy - diagnosed 7/06.Below is some basic info my mom Tina has learned about SMA that she wanted to share to help you understand the disease better:
Good news- I have been accepted in a Clinical Study at Standford University CA that started 08/25/06, please read journal entry 07/22/06 & later dates for more details. My family & friends are in the process of doing a fundraiser on 02/03/07. If you have not received information on the details, please contact my Auntie Sandi- 847-587-8678 or email@example.com Thank You.
What Is SMA?
· SMA (Spinal Muscular Atrophy) is a neuromuscular disease passed on genetically to children by their parents.
· SMA Affects a child's muscular development. The earlier the symptoms are noticed, the more severe the type of SMA. Type 1 is the most severe, affecting children while still in the womb or shortly after birth.
· Type 1 children are usually not able to hold up their heads, roll over, crawl, sit up without support, or walk.
· All muscles are extremely weak, with the weakest muscles being the legs, upper arms and neck. Also affected are sucking, swallowing, digestion and breathing.
· This type is often fatal, with the last known statistics showing an average lifespan of 8 months, 80% gone in less than a year and the majority of the rest gone by the age of 2 unless ventilation or "life support" is provided.
· **HOWEVER**, these statistics are no longer a hard and fast rule, and the more time goes by, the better quality and quantity of life these children are having!
· SMA is the Top Genetic Killer of children under the age of 2!
· 1 in every 40 people carry this gene.
· 1 in every 6,000 children are born with SMA.
· THERE IS NO CURE.
Is There Hope? YES! SMA has been cured in mice! They now know what causes it, and are currently testing compounds to find the one that will work for humans with the most safety. All they need is time...and money. In the meanwhile, the children who are here now are often very short on time.