I was diagnosed when I was about 5 1/2. Before then, the only memory I have is the AYSO soccer team I was on. We’d run around the field, and it was apparently clear to everyone else around me that I wasn’t keeping up with the other kids. My parents initially thought I wasn’t trying as hard. But then they realized there was something wrong. So we went on a whole diagnostic odyssey.
My parents had to fight to have me tested for Duchenne muscular dystrophy. The doctors didn’t think that’s what it was. It was tough for all of us, but my parents have told me that I was very peaceful throughout the diagnosis because I realized there wasn’t anything that I was doing wrong—it was just the way I was born.
Duchenne is a progressive neuromuscular disorder that affects the production of the dystrophin protein. Normally when you work out, you break the muscle and it grows back stronger. But when you lack dystrophin, the muscle doesn’t grow back stronger—it just breaks, and it causes loss of function.
Since it’s a progressive disease, I could still do a lot and play with my friends until around the eighth grade. The struggle for me was pacing myself and conserving my muscles. I would get tired faster, and that made me upset because recess was such a big part of school. But we found workarounds. I would play goalie. Or in kickball I’d kick and have someone else run for me. My parents came to talk to my peers about my situation, and that helped make the transition easier—though some days I was still in tears because I couldn’t keep up with my friends.
In high school, I got really into video games, and that helped me fit in. My friends would come over to play Halo and Call of Duty. I volunteered with the football team, doing video and stats and helping run practices. All the guys made me feel part of the team. And I found a home in my high school yearbook and newspaper. I majored in journalism at USC, and I interned at the The Washington Post. I realized I wanted to write about video games and esports. You don’t need to be a typically abled person to write. You just need a computer and your skill.
I’m fortunate to be relatively mobile even now at 23—thanks to steroid treatment, eating healthy, and stretching daily. I’ve been able to travel to many different countries, which is definitely a bit of an adventure with a disability. My dad has literally carried me through any obstacle—the Great Wall of China, the slippery stairs to the Iguazu Falls (in Argentina). My parents don’t want me to be secluded in my room. They want me to experience as much of life as possible. After the diagnosis, they started a foundation, CureDuchenne, and I speak at the gala every year. I’m pretty lucky to have them.
We’re in uncharted territory now because the average life expectancy is like 26, though it depends on the mutation you have. My main concern is just having to rely on a ventilator at some point in the future, but apart from that, I try to stay positive. My faith carries me a lot. I’ve come so far, and there’s still so much more to do.
Facebook Comments