I’m learning to treat my boys with DMD as individuals, not as a trio

I have three sons with Duchenne muscular dystrophy (DMD). Max, 18, Rowen, 15, and Charlie, 13, are part of a bustling family, joined by four other siblings: Lexi, 22, Chance, 16, Mary, 9, and Callie, 2. We have no sets of twins or multiples, yet I have often grouped together Max, Rowen, and Charlie.

Max was the first to be diagnosed when he was 4. As I was sitting with him in the doctor’s office and having Duchenne explained to me, I was thinking about Rowen, who was 2 at the time and at home with his grandparents. I already knew he also had DMD. From the beginning of my journey with Duchenne, it was multiplied. I was pregnant with Charlie at the time and held out hope that he wouldn’t be affected, but a few short months after his birth, we knew that he had it, too.

From the get-go, they were a trio. We took all three to every appointment at the neuromuscular clinic and to every clinical trial and study. I scheduled their pool therapy back to back. We had a special wagon made that allowed me to push all three at once to avoid having to use three strollers.

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Duchenne and corticosteroids have given them many of the same physical characteristics, like a fuller face, large calves, and a smaller stature. Over the years, they have often been mistaken for triplets — especially once they started using power wheelchairs outside the home.

Additionally, they have often participated in the same activities over the years, like sports team management, theater, and band. This was partly due to interest and because these activities were possible with their physical limitations.

I want to think that I grouped them out of necessity. It was easier to help them when they were together, and clumping appointments made our schedule more feasible.

I am always learning how to be a mother, even after seven children and two decades of experience. Add a triple layer of rare disease to the challenges of motherhood, and I’ll never get it all right on the first try. But I’m working on it.

Celebrating individuality

A couple months ago, I wrote about my realization that I had been doing everything for Max, which was a disservice to him as he’s about to go to college. We continue to correct that, and we’ve seen growth in that area. Now, I’m realizing that treating my boys with DMD as a trio may have caused some unforeseen challenges.

Max has always been involved in theater, and in February, he was preparing to audition for the spring musical. Rowen also enjoys being a part of the theater program, so I encouraged him to audition. He had done productions with his brother in the past, but was adamant that he wanted to wait until next year to try out.

I thought it was because he’s a freshman, but he said it was because he didn’t want everyone to call him Max. Rowen wants to wait until his older brother graduates, and then he’ll get involved in theater. People won’t confuse him with his brother if it’s only him.

I understood immediately. Those mix-ups have always happened, even before Rowen attended the same high school as Max. Rowen and I would arrive at a football game or choir concert at the school and people said, “Hi, Max.”

Max is blond-haired and blue-eyed, while Rowen has dark hair, brown eyes, and is a little bigger. Their chairs are different colors. But some people assumed Rowen was Max because they saw a young man in a power wheelchair. The same thing often happens to Charlie and Max as well.

It was one thing when they were little boys, but now that they are teenagers and becoming young men, they want to be their own person.

We have tried to teach them to be authentic and independent and to know who they are and understand their value. So I’m glad Rowen said something. I’m proud of the steps all three are taking toward their future. Now that I’m aware of this issue, I can better support them and celebrate their individuality.

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 or its parent company, BioNews, and are intended to spark discussion about issues pertaining to muscular dystrophy.