Hearing that your child has Duchenne muscular dystrophy — a genetic disease, mostly seen in boys and men, that causes muscle function to deteriorate over time — can be devastating for parents. You may wonder if your child will be able to participate in normal activities, like school and play, and about what kind of help they will need once they can no longer walk easily, or at all.

There is no cure for Duchenne, and although there are many promising potential treatments on the horizon, currently approved treatments can only slow the progression of the disease, not stop or reverse it. Losing muscle function, and knowing that this process will continue, creates many practical and emotional challenges for people with Duchenne and their families. But these challenges don’t have to rule out having a fulfilling, meaningful life.

Here are some of the ways that having Duchenne can complicate life, and how three people who have Duchenne are adapting to and overcoming these complications.

Help and Connection After a Diagnosis of Duchenne Muscular Dystrophy

When the parents of Ethan LyBrand, age 10, learned just before his second birthday that he had Duchenne, it was a devastating shock, even though they had observed for months that he didn’t have the energy or mobility of other kids his age.

“At the time, unless you compared him to other kids, there weren’t that many symptoms that you could outright see,” says Ethan’s mother, Jordan LyBrand. “He was able to run, able to go upstairs — just a little bit slower.” But earlier in life, she notes, he was late to walk and never crawled, and was always small for his age.

As soon as Ethan received his diagnosis, the Decatur, Alabama, family got in touch with the Muscular Dystrophy Association (MDA) for guidance and support, and “they became part of our family,” says Ethan’s father, Josh LyBrand. Parents of newly diagnosed children, he believes, should “look to the MDA and reach out to parents of other children who have this disease. It’s a great way to talk with them, and for them to talk with us. And know that you’re not alone in any of this.”

The family has been involved in fundraising and advocacy through the MDA, and Ethan was recently named the MDA’s national ambassador for 2020–2021, a role in which he advocates for kids living with muscular dystrophy and neuromuscular diseases.

“I was so happy. I could not believe that I would ever be getting this big of a role,” says Ethan of his appointment. “And I’m going to have this amazing role for two more years.”

Maintaining Mobility With Duchenne Muscular Dystrophy

Duchenne affects everyone a bit differently, and that’s certainly true when it comes to the kinds of daily activities people can do on their own, and for how long.

Ben Dupree, a 26-year-old resident of Dallas who has Duchenne, was diagnosed at the late age of 9 and required progressively more assistance to walk from then until age 15, when he started using a wheelchair full-time.

Before that, walking “was just so tiring, even at short distances,” Dupree remembers. “I began to feel isolated from my friends. I wasn’t able to participate in some of the same activities as my friends, and that gap widened as I got further into high school.”

Advocating for Accessibility

While switching to using a wheelchair full-time allowed him to participate in many activities, Dupree also notes that it brought new limitations, since not every location or activity in question was wheelchair accessible. But, he notes, “as I got into college, I began learning to advocate more for myself and find a way around a lot of those barriers.”

It helped, he acknowledges, that during the year he lived on campus, he had a personal aide to help him stretch and do chores like laundry. But, he says, “I was still relatively independent. I didn’t need assistance that often.”

Air Travel

Traveling by airplane is a difficult task for someone who uses a power wheelchair, Dupree says. “There’s a lot you have to do to pack up a power wheelchair so that it doesn’t get damaged in the process. You have to know how to take it apart and put it together. And there’s a process of getting out of the chair, getting in a transfer chair, and getting transferred onto the plane.”

Still, he travels for conferences related to Duchenne, such as the Parent Project Muscular Dystrophy (PPMD) annual conference, a yearly event that brings families together to learn about treatment advances for Duchenne, recent clinical trials, and the organization’s advocacy work. The conference also features closed sessions just for teens and adults with Duchenne or Becker muscular dystrophy, and individual consultations with experts.

Adapting, and Then Adapting Again

Colin Rensch, a 26-year-old resident of Kalamazoo, Michigan, with Duchenne, remembers being “kind of topsy-turvy on my feet until I was about 12,” following his diagnosis at age 3. He underwent tenotomy, or heel lengthening, at that age, which didn’t help him to walk more easily, and by age 13 or 14 he had started using a scooter, before transitioning to a wheelchair at 15.

Rensch lived on campus in an accessible dorm during all four years of college, and his mobility limitations didn’t stop him from traveling to Vienna, Austria, as part of a research project for his master’s program in music and history. But he admits that “it can be exhausting sometimes when you know that things are continually changing, just a gradual sort of losing of abilities. You just have to stay on top of trying to get any type of resource you can.”

Beyond Mobility, Help With Daily Tasks

Ethan LyBrand is still walking but gets tired easily and sometimes uses a wheelchair, which he has named Bumblebee after his favorite Transformer (from the film series). “I need help with a lot of things,” says Ethan. “I can’t get up from a sitting position; I can’t go use the restroom by myself. Mom and Dad have to help me with my food, getting it ready. It impacts me a lot, but since I’m a really positive person, I always see the bright side of it.”

Undergoing Treatments for Duchenne Muscular Dystrophy

Thanks to his relatively early diagnosis, Ethan LyBrand was able to start steroid therapy (a standard treatment for Duchenne) at age 3, and he also participated in a clinical trial for a myostatin inhibitor — a class of drugs that may help increase muscle mass and strength. And so far, he hasn’t needed further treatments to address symptoms or complications of Duchenne.

In addition to his tenotomy at 12, Rensch underwent a spinal fusion at 20 — a surgery to repair scoliosis, a sideways curvature of the spine, resulting from loss of muscle mass in his trunk. “My back was only 30 percent scoliosed when they fused it, but they fused the whole thing to prevent organ damage,” as well as to improve his posture, he notes.

Dupree notes that steroids for Duchenne cause unpleasant side effects, like irritability and delayed growth. For a while, he was prescribed growth hormones to make up for this effect, “but that upset the equilibrium I had going. In the position I was in, being on the edge of being able to walk, suddenly being taller can throw that off a bit,” he says.

Currently, Dupree takes several medicines to improve his heart function and uses a BiPAP (bilevel positive airway pressure) machine to help with breathing at night. “That was kind of a journey to get to that point. Adjusting to having a mask on at night is difficult,” he says. But “the benefits for my health and well-being, and longevity, outweigh the annoyance of wearing it or the time it took to get used to it.”

Purpose and Positivity With Duchenne Muscular Dystrophy

Duchenne hasn’t stopped Ethan LyBrand, Dupree, or Rensch from pursuing meaningful activities and careers.

Getting and Giving Social Support

In addition to his official role with the Muscular Dystrophy Association, Ethan recently took over the group’s online social channels to offer a “Joke a Day for MDA” as a way to keep people’s spirits up during the COVID-19 pandemic. “It just seemed like a really good idea at the time to show people that they weren’t alone and bring a smile to their face during these tough times,” he says. “I really feel like it gave people something to look forward to every day, and it gave me something to look forward to.”

Unfortunately, due to the pandemic, Ethan’s “favorite week of the entire year,” the MDA Summer Camp, won’t be happening this year in its regular form. In past years at this camp, “I get to see so many of my friends, I get to meet new people, and it’s just the best experience ever,” he says. “There are so many good activities, like archery, horseback riding, a pool, tubing, a water slide, and a zip line, which has got to be my favorite.”

Studying, Singing, and Composing

Rensch is finishing up his second master’s thesis and will soon begin a PhD program in musicology. “The history of music is something I’m really passionate about,” he says. In addition to his academic study of music, “I’ve gotten into singing over the past few years, so that’s been quite fun” — including joining a church choir. With the effects of Duchenne on breathing and muscle strength, “all of the vocal stuff is a little complicated, but you kind of have to figure out hacks,” he notes. Rensch also composes music, and uses software liberally in the process. This, he says, makes it less important that his finger dexterity on the keyboard isn’t what it used to be.

Giving Input on Drug Approvals

After finishing a degree in biochemistry, Dupree is pursuing a graduate degree in social work. He is also a patient representative for the U.S. Food and Drug Administration (FDA) in the Duchenne drug approval process, and sat on a panel for one drug consideration already.

Planning and Problem-Solving Necessary

“From my experience, there are a lot of extra steps that come with having Duchenne to accomplish some goals,” says Dupree. “A lot of things can still be done, it just takes some extra planning and steps that a lot of people don’t have to think about.”

Rensch agrees that to live well with Duchenne, “You have to be a good problem solver. But your quality of life can be pretty good if you’re willing to keep up with those things. Navigating that is different for everyone.”

What Is It Like Living With Duchenne Muscular Dystrophy?