Explaining DMD to my sons: A parent’s journey

Last updated Nov. 7, 2025, by Betty Vertin

It’s been 15 years since I first heard the words Duchenne muscular dystrophy (DMD).

I was sitting in a sterile exam room. A nurse had just left with my then-4-year-old son, Max, so that the doctor could speak with my husband and me.

The door closed, the doctor sat down wearing her white coat, and said, “We will need genetic testing to confirm it, but your son has DMD.”

The moment it became real

I was utterly unprepared for what the doctor told us that day. My husband and I had been referred to a neurologist at the nearest children’s hospital because our pediatrician suspected Max had something going on with his muscles after a blood test revealed elevated CPK levels.

However, our doctor warned us to stay off the internet and not Google anything until we had spoken with the specialists. I did as I was told, perhaps because I was naive not to prepare myself for what could be a difficult conversation, but most likely because I was in denial, and if I didn’t look it up, then nothing would be wrong.

But something was wrong, and at that appointment, we were informed that our three younger sons at home could also have Duchenne. Months later, after further testing, it was confirmed that three of our sons had DMD: Max, Rowen, and Charlie.

Finding the right time to talk

Max, Rowen, and Charlie were all very young when they were diagnosed. At that time, my sons were not asking me questions about why they were tired or anything else disease-related. We had time to think about the words we would use to talk to them.

However, we knew right away that we would inform them soon and that we would always be available to answer questions, seek answers, and help them understand the disease.

Max was about to start his second year of preschool, and we wanted to ensure that his teachers understood both the disease and his abilities and limitations. We learned that a stroller at preschool would be helpful when he was fatigued, and that he needed the right words to tell someone when he was tired.

Implementing the stroller’s use and helping Max learn to describe his symptoms are what prompted our first conversation with our son about his disease. It was the first time in his life that he would see the difference between himself and his peers.

How I explained DMD to my child

The first conversations with Max and his brothers were very simple. We used the phrase “special muscles.” We didn’t tell them they had DMD because, at their ages then, it would have been hard for them even to pronounce it.

We explained that their special muscles would make their legs tired. We also taught them early advocacy, instructing them that if their legs were tired, they could tell an adult, who would help them get a ride in a stroller or wagon.

My husband and I never wanted to overwhelm our sons, and so we explained DMD on a need-to-know basis when they were young. For instance, when we were going to another doctor’s appointment, we explained how doctors were helping us with their special muscles.

It was important to us to be age-appropriate with our sons and gradually introduce more detailed language to discuss the complexities of their disease.

Now, as young adults, they understand their disease, engage in conversations with their medical teams, and are learning to manage other aspects of their care.

Supporting your child after the conversation

In our experience, the conversation never stops. Duchenne is complicated, care and treatment are complex, and progression is constantly changing the way DMD looks in our sons’ lives.

We revisit the conversation about what the disease is when we experience a change. Occasionally, over the years, if one of our sons is struggling with an aspect of the disease, we have asked for help from their medical team or a counselor.

Ultimately, we have always believed that the best approach is to be open and honest with our kids, especially when discussing difficult topics.

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