When I was 8 years old, I was diagnosed with a disease called LGMD. It stands for Limb-Girdle Muscular Dystrophy. It's a really long name, but basically, it means that my muscles get weaker over time. At first, I didn’t really understand what it meant, but now that I’m 9, I know it’s something that makes doing normal things really hard. I love playing with my friends, but lately, it’s been really tough. My legs get tired super fast, and I can’t run and my friends don’t understand the reason.
I used to be able to swing on the gym bars and play tag, but now I have to sit and watch more often. It makes me feel sad because I miss having fun with them without getting so tired. Even getting dressed is hard. My arms and legs don’t work as well as they used to, so putting on my clothes takes a lot longer. Sometimes, I can’t even get up from the floor by myself. My mom and dad help me a lot. They’re always there when I need them, and they’re doing everything they can to find a way to make me better. We travel to different places and meet lots of doctors. I know they’re trying really hard, and I love them so much for it.
There are so many things I love to do, like drawing and painting. Art is really special to me because it lets me express myself and forget about my disease for a while. I also love playing the piano. The music makes me feel happy and free. My biggest fear is that one day, I won’t be able to do these things I love because my muscles might get too weak. It’s really scary to think about, and I try not to, but sometimes it’s hard.
Every night, I hope that they find a medicine that can help me. I dream about running and playing with my friends without getting tired. I want to be able to do all the things I used to do and not feel left out.
Even though it’s hard, I try to stay positive because I believe that one day, there will be a cure. Until then, I’ll keep doing my best and enjoying the time I have with my family and friends.
Thank you for reading my story.
Love,
Sara
“The only way we move forward is to research. It’s not a process that should ever stop”
“Tom Robinson”