Hi Terry. I haven't contacted Shriners or MDA. I think Skyler is too young at this point. Those facilities will come in handy later on in his life. I am really hopeful for this study and I am so happy you are seeing progress with Willie!! Keep the faith! Seeing is believing. So stay strong!!
Hi Terry..I understand completley. There are good days and bad days. I try to think of the positive. I really hope this PTC 124 study helps our boys and for yours to stay strong and for your daughter to keep the faith. I know it is really hard..believe me. But we can get through this!! Much prayers!!
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I saw your post on collecting the soda tabs for Shriners. What is that all about? We would like to do that too.
Take Care, Jen
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