Meet Ethan

Age 10
Avilla, Indiana
Duchenne Muscular Dystrophy

The cat whisperer, one of the many loving descriptions, Melanie, Ethan’s mom used when talking about her 10-year-old son.  “He loves them and they love him”, so much that they come when he calls. Defying all we know about cats, Ethan is a boy who loves all the things little boys love, including wrestling, robotics and theater.

In 2015, Ethan’s mom carried him full term, and when he was born, he was a healthy 9lb baby boy and met all milestones up until 18 months of age. It was not until Ethan contracted hand foot and mouth from a church nursery did their lives change quickly and drastically. Ethan was active, loved his WWE sports and everything boy.  “There was no stopping him” and “only one step behind his older brother”, who was two years older, Melaine explained. However, after Ethan got sick, they started to notice that something had changed and the normal they knew changed very quickly.

It was after Ethan began to fall more than usual that Melanie’s sister suggested that Ethan get tested. You see, Melanie is not a stranger to Muscular Dystrophy, as her sisters both have sons with the same disease. After a blood test at 22 months, Ethan was diagnosed with Duchenne Muscular Dystrophy (DMD). It was then that Ethan began water therapy, recreational therapy, rode horses and participated in physical and occupational therapy, including speech.  But unlike her one nephew, who’s decline began at 12 and her other nephew who is still walking at 10, Ethan lost his ability to walk at 8 years old, regressing to crawling, and now, at age 10 he is in a wheelchair full time. Three stories, three different outcomes, and when questioned Melanie plainly stated, “the disease does not discriminate”.

Ethan’s diagnosis of DMD refers to a severe genetic disorder that causes progressive muscle weakness and degeneration, primarily in boys. Unlike our muscles that regenerate – DMD does not allow regeneration. Once a muscle is done, it turns into scar tissue, working from feet up, which will eventually move to the lungs and heart.

Ethan’s processing system is a little slower maturity wise and mentality a little younger than most, but he stays right up there with his peers, enjoys school, and with absolute confidence Melanie foresees general education through high school graduation. While Ethan currently showers and brushes his teeth, the family is researching a new system as it gets harder, and he is now using a grabber to pick things up.  

As for Ethan’s medical needs, Ethan recently underwent surgery for a colostomy bag and is still healing. He’s been on steroids since the age of 2, taking a total of 8 pills a day, and every 6 months, the family travels to Columbus, OH from Indiana for doctor and clinic visits. Up until recently when the needs of each boy changed, it would be an extended family caravan trip with Melanie, her sisters, and all three boys to travel to the “best facilities in the U.S.” They would sit together, have conversations and spend 3-5 hours seeing every doctor caring for them that included psychology, and physical and occupational therapy. Due to changes in needs, Melanie now makes that trip with Ethan herself.

Melanie, a special needs teacher’s assistant, who now substitutes when she can, with a dedicated husband who travels for work, has now committed to full-time care of Ethan, transporting both children to and from school. After applying for grants, the family was able to obtain a handicap accessible van to help with their transport needs.  They’ve also had to remodel their home to better accommodate Ethan, including an accessible bathroom and track ceiling lift to assist him out of his chair.

A bashful, ten-year-old who can remember walking and being active, Ethan is not one to share his feelings but loves all the things a ten-year-old loves. He’s crazy about WWE with over 300 characters and outfits, and for his last birthday, his mom surprised him with a mom/son date night to WWE Raw where he got to see his favorite characters in real life. Ethan loves food, trying new foods and watching YouTube foodie channels. Over the summer he was able to show off his acting skills by participating in the Jungle Book play. This year, they participated in Make-A-Wish that allowed Ethan and his family to travel to Hawaii’s Disney resort and enjoy spending time with each other dipping their feet in the ocean, watching the luau dancers, and hugging all of the Disney characters. “He’s just a little boy” Melanie conveyed with a conviction of love. A little boy who’s love of cats, food, wrestling and the art of theater overshadows the challenges of their days.

The family’s faith has played a significant role in their lives and according to Melanie helps them through the good, the bad and ugly, and just recently, in a very cool experience for them having Ethan baptized in their Church. In response to what she wished others knew about caring for someone with DMD, without hesitation, her response was, “the simple things – don’t take them for granted” and mostly, that she never wants Ethan to be looked at or treated differently, and that “he is a normal regular boy, he is not the disease.”

January 2026 – written by Lisa Heber, MDFF volunteer