_“Trevor and I are trying to plan our future. We’re looking to buy a house together, we’re thinking about kids.

It’s an incredibly terrible feeling to have such big dreams, and then to be told more than once that I’ve just missed the window for access to treatments that might help me achieve them, all because of my age.”

_“There are treatments for SMA out there but no one will give them to me. I really don’t know what they’re waiting for. Why not me? They’d better not wait too long if they want people like me to keep contributing to society.

I’m a farmer. I feed people. And to keep doing that, I need to retain as much of my strength as possible.”

_“I’m 32 years old now and the disease has become a very big problem. It’s terrifying, actually. I have so much trouble with stairs. It’s only a matter of time before I’m in a wheelchair.

And what’s so frustrating is that the research I was counting on did pay off. The treatment is here, it has been approved, but it’s not available to me because of my age and my SMA type.”