Ethan Pyles Reading, PA 3,429 Votes
My name is Ethan Pyles and I’m 10 years old. I live in Exeter Township, Berks County, Rdg., PA with my mother Sandra 49 and my brother Mitchell 15. I am on the Autism Spectrum and was diagnosed with Duchenne’s Muscular Dystrophy when I was 6 years old. My mother tries to continue to work full time in order to support us but it is getting difficult with my disease progressing. It is undetermined if I inherited Duchenne’s from my mother or if it was a sporatic mutation. I am missing #51 gene which carries the protein distrophin. Because I don’t have this my muscles are breaking down and are unable to heal. After my skeletal muscles breakdown then my lungs and heart will start to get weaker. I’m in pain alot. My neurologist has me taking 45mg of steroid everyday so I can continue to be mobile and to keep my important organs strong but as I get heavier the dose increases which is doing a number on my eyes and stomache. Unfortunately there’s no other options because I like to do what other kids do and play football and basketball only if it’s 1/2 hour a day until I’m to tired then I’m back in my chair. I am one of Jerry’s kids through the MDA. They are continuing their research for a cure and help with copays and send kids like me to summercamp for a whole week right after school is out. I also have to go to daycare everyday so my mom can work which is close by our house but because it is off the local bus route my mom has to scrape together $15 per trip to have Barta transport me and my chair and we’re less than a mile away. While I’m in school I leave my chair there because we can’t afford to have it transported every day so I don’t have it to go to the playground or other activites. My mom has tried to find other ways to transport my power chair for me but it is very frustrating to her because nothing else has worked. We also have to go to Hershey hospital and Shriners to see all of my doctors but can’t take my chair. Please vote for me to deserve a handicap van so that’s one less thing my mom worries about. Thank you!