Name: Ethan Pyles
Hobbies: Advocating, Drawing and Singing
Favorite Teams: Denver Broncos and Golden State Warriors
Best Friend: His dog Axel
Just like all 14 year-olds, Ethan Pyles loves to hang out with friends, root for his favorite sports team, swim in the pool, and play with his dog Axel. However, unlike other teens his age, Ethan has never ridden a bike around the neighborhood with his friends, played on a sports team with other kids, or even chased his dog Axel around the backyard.
Ethan lives with Duchenne muscular dystrophy, a deadly neuromuscular disease that has been robbing him of his independence and strength since he was diagnosed at age six, and prevents him from participating in normal activities that other kids his age do.
Despite his prognosis and his lack of independence, Ethan remains a fun loving teen with a friendly disposition who spends his free time advocating for his friends living with Duchenne.
Ethan and his mom Sandra, also, remain hopeful for the future. In 2015, Ethan entered a clinical trial for a treatment for Duchenne that was recently approved by the FDA. This treatment has helped Ethan maintain some of the strength and endurance he is expected to lose as he grows up. However, this means extra doctor’s appointments, some of which are hours away by car.
Luckily, Ethan is a Jett Giving Fund participant! The Jett Giving Fund helps families like Ethan’s afford medical and transportation equipment they need to improve their quality of life. In a few months, Ethan will hopefully be the owner of a new handicap accessible van that will help him get back and forth to the doctor’s office safely!
While Duchenne impacts Ethan’s everyday life, he doesn’t let his disease prevent him from advocating for his friends and raising awareness.
To support kids like Ethan and help him and his friends stay stronger longer, DONATE to Jett Foundation in honor of Ethan!