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What brought you to our SMA forum community?
Living with a rare disease can feel isolating. Between doctor appointments, equipment, insurance battles, accessibility challenges, and the emotional ups and downs, it’s easy to feel like you’re carrying a lot on your own.
That’s why I am so grateful for this community and the space we have here to help each other out. There’s something powerful about connecting with people who just get it.
I’m curious, though. What brought you to our SMA forum community? Has connecting with others impacted your journey?
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6 Replies
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I’m here for my grandson. He is 8yo, and type 1. He was born symptomatic, and received zolgensma in clinical trial. He is non-ambulatory, and when he gets sick, it can lead to an extended hospital stay. So, I am here for him, and for myself too. I am his primary caregiver.
My heart hurts for him, however, he is as happy as a lark! 🙂
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Thank you for sharing a little more about yourself and your grandson. You both sound very lucky to have each other. 🙂
If you don’t mind me asking, how is he doing on Zolgensma? Have you noticed any improvement in his motor function?
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Going to be brutally honest here. Spent much of my adult life avoiding the disability community because I kept coming across a persistent sound of self-pity. Was pleasantly surprised to find none of that here. Instead, I found a bunch of people living their lives.
I first came here to see if this community had solutions I hadn’t thought of for a couple issues. I’ve stayed because I realized that I have a few solutions people haven’t thought of. Sharing information opens up possibilities for everyone.
Also, it’s been a really good thing to see other people navigating neuromuscular disorders. It’s a different animal than a lot of other disabilities.
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Couldn’t agree more! The vibe here is refreshing for sure.
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I’m so happy to hear that. Thanks for being here @PJ5 !
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Thank you so much for sharing this with us, Susana. We are so happy to have you here and learn from your insights!
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