"Welcome Heather. There is a group that you can join for type 3 who will know more than I do. My son was type 1 and without Pediatric Vivonex he would not have digested anything. If you check curesma.com I think there is a resource…"
"Welcome to SMA Space, Mischa. If there is anything that I can do to help please contact me. My son had type 1 and lived into adulthood. We used medical interventions like food pump, ventilator, suction, etc. It helps to have a…"
"Thank you Olga and Suzanne - I am going to meet with Child Study and see what our next steps are. The more I read I am thinking that we need an IEP. I guess we are a little later than usual because we did not get into early intervention. We…"
Hi, I have a 16 year old daughter,SMA type 3 who has gotten very weak over the past few months. I heard about the amino acid diet and would like to know if any of you use this diet on your type 3 children? She is tired alot and weak and is having a little trouble getting her breath sometimes. I heard that the aa diet could possibly help these problems. I look forward to your input.ThanksSee More
I'm an adult with SMA III and still slightly ambulatory using a wheelchair, walker, nothing/furniture depending on day and environment. I would say I was completely ambulatory( slow gait and no running once in middle school)…"
My son William was diagnosed at 4, we had IEP since kindergarten (not familiar with 504). William is 9 now. What I think helps he is in co-ed class with two teachers. If he needs to navigate stairs, he is the last to go with one of the…"
"Hi Cary - Thanks so much for your help. If you don't mind my asking, why did you go for an IEP rather than a 504 plan? I was talking to the school nurse today and she said it sounds like we would be OK with a 504 at this point. I am going to…"
"Welcome. My son is 7yo & in 1st grade. He is ambulatory, uses a wheelchair for long distances. The school he goes to has a second story plus about 8 stairs to a new addition. He can do the new addition, which he does several times a day. If an…"
"Hi - I know... there are so many things to worry about, aren't there ? I know that it just helps to "talk" to people who understand. I got a lot of support here in the summer/fall when we were initially going through a lot of testing.…"
"I have the same questions that you do. My son is 3 with type 3 and when it is time for his schooling, I wonder these same things. I would also like to know any facebook pages out there. We were just diagnosed the end of Dec. Sorry that I am not much…"
Hello - I just registered my 4 year old son for Kindergarten. He is ambulatory (anterior horn cell disease - they are looking at SMA-LED, negative for 5q SMA, so not technically a type 3, but he moves like a type 3).We just recently got Smart Steps ankle braces and they are definitely helping with stability, but I am worried about the number of stairs in the building. He can do stairs, but he is slower and definitely needs to concentrate and with little ones walking in line there are about a…See More
The list was getting too long -- b/c there are SO MANY GREAT ORGANIZATIONS raising awareness and funding to cure SMA. Please visit this link to see the latest list of resources available to the SMA community.