What superheroes look like in life with Duchenne muscular dystrophy

Superheroes were a large part of my life less than a decade ago. I am a boy mom. We had four sons in five years, and our house quickly became a lived-in museum of all things boys. Power Rangers, X-Men, and Marvel and DC Comics characters were like family members for a few years.

Those superheroes joined our family of nine. I share seven children with my husband, Jason: Lexi, 23, Max, 19, Chance, 17, Rowen, 16, Charlie, 14, Mary, 10, and Callie, 3. Max, Rowen, and Charlie all live with Duchenne muscular dystrophy (DMD).

Rowen’s fifth birthday cake was adorned with his Power Rangers figures. When Charlie transitioned from a crib to a big-boy bed, a Superman mural covered the wall in his bedroom. Max, who flew like Iron Man for his Make-A-Wish, still has bedroom walls covered in Marvel characters. Chance has always been our sports-loving son.

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But these superheroes cannot compare with my sons or others living with Duchenne. Spider-Man, Iron Man, and the Power Rangers all did good, risking their health and well-being to save lives. They were physically gifted with superhuman strength, filled with bravery and courage to face danger for the betterment of others. All of these remarkable qualities are worth recognizing. I’m sure my sons must’ve seen something in these characters that they didn’t see in themselves.

However, I’ve always seen superheroes when I look at my sons. Like others living with DMD, my sons face every day with courage. They are gifted at conquering new skills that their bodies will soon take away. They don’t back down in fear but forge ahead, doing all they can to experience each day. They’re not blessed with superhuman strength, stamina, or skills. Instead, they fight each day with hearts the size of Texas and an unmatched curiosity and zest for life.

Unmatched, that is, except for their moms.

Recognizing Duchenne moms

I never want the focus on me, but I know how much I do as a Duchenne mom and caregiver. And I now know a hundred other mothers who work just as hard, advocate more, and sleep less than I do to care for their sons the best way they know how.

I want to use this column to highlight Duchenne moms, who are as much heroes as their sons and Spider-Man.

They know everything. Moms are the experts on their children. Some of us have little medical training or experience when our children are diagnosed. But by the time we make it to our child’s next doctor appointment, we know what to ask the highly trained neurologists and cardiologists.

We get a crash course on clinical trials. One day, we have no idea what a trial involves, but just days or weeks later, we may be enrolled in one to try to save our children.

Many of us are not public speakers, yet we become overnight advocates. We talk to our children’s teachers and peers to educate them about DMD. We testify before the U.S. Food and Drug Administration or travel to Washington, D.C., to visit Capitol Hill and plead with legislators for funding and programs that will save our sons.

I am a 6-foot-tall former college athlete married to another former college athlete. Lifting and transferring our children wasn’t a challenge for nearly a decade, and then we were gifted a ceiling lift system from family and friends who held a fundraiser. That’s not typical. More often than not, parents of children with Duchenne have not spent countless hours in weight rooms so that they could throw things far (me as a college shot-putter) or hit people hard (my husband as an offensive lineman). Perhaps they have never played sports, are petite, or have back injuries. And yet, they find a way to care for their sons in the safest, most loving way possible.

The traits of children and young adults living with Duchenne, their parents, and their caregivers are the traits of a superhero.

Note: Muscular Dystrophy News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Muscular Dystrophy News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to muscular dystrophy.