“I remember being at the doctor with my mom as a teenager and him asking if I was active in sports. My mom laughed. ‘Is guitar a sport?
I’d never been able to keep up with my peers in sports or active play. I tired easily, I was clumsy, and I fell a lot. But we always just thought I wasn’t particularly athletic. We had no idea there was a chronic and incurable illness lurking behind it.
When I finally got the diagnosis of type 3 spinal muscular atrophy (SMA), I was in denial for a longtime before I really began to grieve. I was still relatively healthy and there was so much hope in the treatment research that was being done. I just carried on with my life, telling myself that there would bean effective treatment available long before the disease became a problem for me.
“I’d never been able to keep up with my peers in sports or active play. I tired easily, I was clumsy, and I fell a lot. But we always just thought I wasn’t particularly athletic. We had no idea there was a chronic and incurable illness lurking behind it”
I’m 29 years old now and the disease has become a very big problem. It’s terrifying, actually. I have so much trouble with stairs. I can only walk on flat surfaces, really, and I don’t know how much longer I’ll be able to do that. It’s only a matter of time before I’m in a wheelchair. I don’t pick up my nieces anymore. There’s so little strength or dexterity left in my arms that I’m afraid I might drop them. AndI’m going to be pushed out of my job very soon because I work in health care and, ironically, it’s an extremely unforgiving field when illness and disability put limitations on what you can do.
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. I’ve fought so hard for access, but at this point, honestly, I’m not holding out hope anymore. The treatment may become available, but it’ll be too late for me
All I want is to be independent. To be able to work and contribute to society. To be a father some day and be able to hold my kids. To have my future wife be my partner rather than my caregiver. But I’ve accepted that those things are too much to ask.”
SMA is a a rare disease that leads to the gradual degeneration of nerve cells. Currently, there are 3 Health Canada-approved treatments for SMA, but type 3 patients — like 29-year-old Bryce — don't have access to any of them.
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