“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…
Columns
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…
Those who read my columns regularly will know that my last one was written just after my wife, Wendy, and my daughter, Jill, took off for a vacation in Croatia, Greece, and Slovenia. Over their two-week trip, we communicated by FaceTime a lot, and they seemed to be having…
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…
Aug. 14 isn’t just another day for my family. This year, our conversations were imbued with heartfelt remembrance as we gathered around the dinner table. We celebrated the birthday of my brother, Isaac, even though he was no longer with us physically. Isaac passed away due to heart…
It’s been about an hour since the garage door closed and my wife, Wendy, and daughter, Jill, set off on what I hope will be an incredible adventure. They’re headed on a 15-day vacation to Slovenia, Croatia, and Greece, and I couldn’t be happier for them. So why am I…
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…
While writing this today, I’m marveling at how swiftly the passage of time has occurred. It’s been almost a year since I published my first column for Muscular Dystrophy News Today! In my debut column, I documented how, after more than two decades of battling Duchenne…
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…
Recent Posts
- I rarely answer honestly when asked, ‘How are the boys doing?’
- Trial testing gene-editing therapy PBGENE-DMD gets FDA green light
- A winter blizzard had me cooped up at home for days
- New Phase 3 trial of Duchenne gene therapy SGT-003 to begin dosing
- The rule of 10 helps me navigate bad days with LGMD