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… Read more

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.

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.

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.

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!

Hi everyone! I am nana to Charleston “Cash” Goeppert, a Type 1 that’s 10 years old!!! I didn’t know about this forum until recently and I’m happy to be here to share and to learn.