Over the next few weeks, we’ll be sharing “LGMD2A/R1 Stories” so you can learn more about the C3 Community as we raise money together to drive scientific research toward a cure for this muscle-wasting disease. Today, meet Walker:
Hi, I’m Walker and I have LGMD2A/R1. I was diagnosed a couple months before my 10th birthday. My symptoms affect the muscles in my back, legs, and arms. My back sways creating balance and walking problems for me, and I don’t have the strength to climb stairs or walk very far. I ride my scooter at school to get around. Getting out of bed, standing up from the couch, or even getting off the toilet can take a lot of effort. Tasks that most people don’t think twice about are things I have to plan around every day.
These challenges can make it hard to do everything my friends do, and sometimes that’s really frustrating. But I still try to focus on the things I enjoy most — playing video games, singing in the school chorus, and hunting. Those are the moments when I feel the most like myself.
A cure would mean everything to me. It would give me the chance to be more independent and take care of myself without needing so much help. Being able to move through the world more freely and confidently would change my entire life.