The Regret of Not Being Able to Afford Zolgensma — Risdiplam + Zolgensma?
My baby brother has been on risdiplam for about a month now but the regret we carry very heavily is about Zolgensma. Especially when you come from somewhere like India where only way to get near to the treatment is fundraising and seeing videos of crowdfunding campaigns, it can be heartbreaking. It is literally parents getting on their knees, I don't mean that disrespectfully or anyway judging one's pain, but it sometimes feels like begging from street to street, with hands folded and tears in their eyes, asking every person they come across for help. And if your child is critically ill, their life can almost feel dependent on whether their story reaches an extraordinarily generous rich person. If you look at crowdfunding platforms, this is often what seems to capture people's attention the most. I don't think every parent can campaign like that. Even when you'd do anything for your child, it isn't always possible and admitting that is painful. Our family carries a lot of guilt over this, though we're still trying to find ways but this part's the hardest
If a child is already on risdiplam and later becomes eligible for Zolgensma, could Zolgensma potentially provide additional benefits beyond risdiplam? For example, could it help preserve functions that risdiplam alone might not, even if major motor milestones or walking remain uncertain with either treatment because already lost motor neurons cannot be restored, as our doctor explained?