teri-taylor
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While I am not the one in my family with SMA, I embrace it with my 10-year-old grandson, Charleston!!!! I have to be honest that I was angry, hurt, mad at God, didn’t understand WHY, etc. when he was diagnosed as a baby. But let me tell you what — my grandson has taught me what unconditional love really is!!!! He’s changed my life for the better in so many ways. Without SMA, he wouldn’t be who he is, and I wouldn’t be who I am.
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Alyssa, it’s very scary. His seizures are very, very serious (i.e., helicopter rides to hospitals)…..but he’s pulled through so far. He’s a super weak Type 1 but has a very strong will to live!!!!!! Most kids around his age (type 1’s) are getting seizures, but the company refuses to list it as a side affect.
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We are changing my grandson Charleston from Spinraza to Risdiplam. While Spinraza has helped him, it’s also given him seizures. We are hoping the seizures at least diminish with Risdiplam.
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I’m in California and it’s horrible here. I don’t let myself think about the holidays because it just makes me sad. I think we are in this mess for awhile.
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I just got this book yesterday! I know one of the authors of an essay, Ariel Henley. She’s a wonderful writer. I’m starting the book today!