Meet Ethan – Indiana

Six-year-old Ethan loves WWE. He has all the action figures his family can find, wrestling rings, and two golden championship belts. While Ethan’s “wrestling guys” match up in the ring, Ethan fights a bigger match every day — Duchenne Muscular Dystrophy (DMD).

Ethan was diagnosed with DMD at almost 2 years old. Up until that point, it was a match his parents, Steven and Melanie, thought he had dodged.

Melanie had a normal pregnancy with Ethan, giving birth at 39 weeks and five days. He was a normal baby, and everything was just as it should be, until at 18 months old, Ethan fell ill with Hand, Foot, and Mouth Disease. While any other child would have fought the virus quickly, Ethan didn’t. It wiped him out completely, and soon, he started to lose both his mobility and physical stability.

Knowing all too well the signs of Muscular Dystrophy (MD), one of Melanie’s older sisters convinced her to get Ethan tested. When the doctor called with the results, “I kind of went black for a minute and I had to sit down and I couldn’t believe it; Ethan was our last child and we thought we had dodged a bullet,” says Melanie.

Muscular Dystrophy runs in their family. Melanie and both of her older sisters are carriers of the disease and they each now have a son with it. Since Melanie and her family knew what to look for, and had experienced the diagnoses twice, she thought they were in the clear with Ethan. What she later learned, is that DMD symptoms can sometimes lay dormant until the child’s immunity is down, which was the case with Ethan.

While Ethan still has the ability to move around and play, it’s hard on his body. He doesn’t have the same agility and stamina as other kids his age. “Imagine having two, five-pound weights on your ankles at all times,” Melanie explains, “that’s how they feel.” More recently, Ethan was also diagnosed with ADHD, which has been an added adjustment to their lives.

Melanie wants others facing similar diagnoses to know that there are huge networks of people and resources out there. There’s also much more research, technology, and medicine than there was even when Ethan was diagnosed. She has hope in the development of treatments for DMD.

Melanie found out about A Kid Again from a clinic at the hospital Ethan goes to every six months for his round of check-ups. Their family tries to attend every Indiana chapter event they can — so far, they’ve been to the children’s museum, Christmas lights at the zoo, and plan to do so much more — because it’s a way to be surrounded by others in similar situations. Melanie also shares about A Kid Again with other families that experience disabilities.

She’s an advocate for DMD in schools, too. Every year, she goes into both Ethan and Elijah’s classrooms to read books about DMD and explain why Ethan is the way he is. She teaches his classmates that his muscles don’t work like theirs do and that’s the only difference between them. His classmates are always quick to ask questions and accept Ethan’s disability.

Although Ethan wrestles with DMD every day, “there’s nothing he can’t do. In his little mind, he can do it all.”