It’s no secret that I love the holidays. If you look through my past columns, you’ll find some about Christmas, Thanksgiving, and birthdays. I derive so much joy from creating a celebration for my family. Halloween is no exception. I am the queen of a good…
Party of 9 – a Column by Betty Vertin
I always assumed my three sons with Duchenne muscular dystrophy (DMD) wouldn’t get to experience college. I knew it would depend on their health, disease progression, and openness to making it happen, as well as all the typical things like good grades and test scores. However, as my…
My oldest son, Max, is graduating from high school this year. I know I’ve shared that repeatedly, but the long list of lasts he’s experiencing as a senior continue to inspire my writing. I have three sons with Duchenne muscular dystrophy (DMD): Max, 17, Rowen, 14, and Charlie,…
I was mad at my husband, Jason, for spending the night in the recliner. He’d been there because he’d been snoring loudly enough at night that I hadn’t been sleeping well, and he wanted to ensure I got a good night’s sleep. But I was in no mood to recognize…
I drove my oldest son, Max, who is 17, to his second college visit this week. As we veered onto the interstate, I told him I knew someone his age who’d already decided to attend the school we were about to visit. He was surprised. “Already?” he said. “How…
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…
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