Duchenne muscular dystrophy (DMD) is not a one-size-fits-all disease. I have three sons with DMD: Max, 17, Rowen, 14, and Charlie, 12. Each differs vastly from the others, from the speed of disease progression to how their bodies handle the changes, plus how each deals with the stress and…
“Vroom, vroom, vroom” trails my son in the hallway at school. “Whoa, there. Do you guys have a license for those things?” an older gentleman says as my family navigates our way through a shopping area. “You drive that well,” a stranger remarks. Those are just some of the comments…
Duchenne muscular dystrophy (DMD) can be all-consuming. It’s so big that it often takes up all the leftover space in a room. However, we’ve had years where life is bigger than Duchenne. I’m grateful to be experiencing one of them now. My life often revolves around DMD because…
The first time the words “Duchenne muscular dystrophy” (DMD) were spoken to me, they might as well have been in a whisper. I could barely comprehend the specialist sitting across from me who was saying something was wrong with Max, my beautiful, oldest son. I remember asking questions, although…
My journey as a mom of three boys with Duchenne muscular dystrophy (DMD) has had its fair share of highs and lows, with my hope waning during the lows. But now, my hope is as strong as it’s been in a few years because of the late June approval…
The diagnosis of Duchenne muscular dystrophy (DMD) for my sons Max, 17, Rowen, 14, and Charlie, 12, left me with layers of emotions that continue to make their way to the surface more than a decade later. I recently saw a post on a parenting social media…
In last week’s column, I mentioned that thanks to the encouragement of some fellow Duchenne muscular dystrophy (DMD) moms, I’ve begun using a Hoyer lift with my 14-year-old, Rowen. He’s one of my three sons with DMD. I’ve had the lift since Rowen became nonambulatory at…
My family spent the end of June attending the Parent Project Muscular Dystrophy (PPMD) annual conference in Dallas. It was the first time I had joined the conference in person since before the pandemic, and the first time in nearly a decade that we participated as a family.
The toddler was crying, hungry for a snack, standing just behind me as I sliced pieces of watermelon. But I was smiling. The big kids were in the pool, and I knew they’d be delighted to have watermelon on the deck. I cracked open the sliding glass doors and yelled,…
While the boys are away, it’s time to play! Well, not exactly. My three sons with Duchenne muscular dystrophy (DMD) — Max, 17, Rowen, 14, and Charlie, 12 — are away this week at Muscular Dystrophy Association Summer Camp. But instead of rest, my husband and I are…
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