The impact from this disease has changed his life forever. This disease progressively makes his muscles in his body become weaker and weaker over time.
For the last few years there was no cure and no treatment. Needless to say it was devastating to watch your little boy become weaker and weaker through the months. I watched as my little boy began to have trouble just getting up from the seated position. I watched as he fell 20 plus times a day and I'd rush to catch his falls while also comforting his bruises. I'd see his struggles to walk as fast as other kids his age...not able to run fast, not able to jump.... Now at 6 yrs old, his condition continues to deteriorate...things like...sitting up in bed, getting out from too heavy of blankets, and putting on his clothes are tasks he cannot do without help...my heart breaks when I see him stand back and just watch other kids play basketball and other sports. I see it bothers him but he doesn't let me know..He is the strongest little guy I know.
I spend a lot of my time doing the things with him to keep him learning and focused on mental stimulation rather than physical, but the first time ever in the history of this disease there has been a treatment released just a few months ago and is currently available. The only problem, however at the moment, is that the cost of this medicine is $750,000 for the first year and $359,00 for each year after. Insurance will cover some but not all and its devastating to learn that such a needed medicine costs so much.
I am willing to give everything I have for him but fear its still not enough. Until his double coverage kicks in these out of pocket costs will remain.
Children with SMA (Spinal Muscular Atrophy) are battling against time as this is a progressive disease, each day is precious. So I am trying to raise the money I can to get him through his first year!
I have NEVER done anything like this before and didn't plan on it either but I am desperate for his treatment to come to be....I am desperate for my son to be able to run for the first time...to be able to walk up the stairs...to put his own clothes on...to lift his legs by himself and every other thing that a normal boy should be able to do....Prayers will do just as well......thank you!
~Corrina (Jonah's mom)
- Cyndee Stevens
- Liz Carranza
- Jessica Robinson
- Timothy Momyer
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