Ethan Pyles is one of the toughest 14 year olds on the planet! He lives with his mom Sandra and older brother Mitchell in Pennsylvania. At a very young age, Ethan was diagnosed with Duchennes Muscular Dystrophy (DMD), a genetic disorder characterized by progressive muscle degeneration and weakness. There is currently no cure for DMD, but Ethan is playing a huge part in finding one.
Duchennes is one of the most common types of muscular dystrophy. It is caused by an absence of dystrophin, a protein that helps keep muscle cells intact. DMD primarily affects males with symptoms typically starting between the ages of 3 and 5. It is estimated that about 1 in 3,500 boys are born with DMD. Although it is a genetic disorder, Duchennes can develop without any family history of the disease. There are currently several clinical research trials seeking a cure, one of which Ethan is involved in.
In 2015, Ethan’s mother was given the opportunity to have him participate in a brand new research program through Kennedy Krieger Institute in Baltimore. Ethan, being only 12 years old, pleaded with his mother knowing that this could make such a difference and even save his friends lives. He has to receive weekly infusions through a port in his chest, as well as travel to Columbus, OH for deep tissue muscle biopsies. This entire procedure is extremely painful and time consuming, but it is paying off! Recently the drug Ethan has been receiving, known as ExondyS51, was approved for commercial use.
Over the past few months, Ethan’s mom started looking into purchasing a wheelchair accessible van. They recently received wonderful news from the Jett foundation based out of Massachusetts. They agreed to match any funds raised up to $15,000 towards the purchase of their new vehicle.
You can visit Ethan’s page to learn more about his story or to make a donation by clicking here.