As I’ve tried to decide what part of Duchenne muscular dystrophy (DMD) to write about this week, I can’t seem to come up with the amount of focus necessary to do so. Instead, Duchenne is always there, all the time. Does that happen to anyone else? Duchenne can take…
Party of 9 – a Column by Betty Vertin
While very serious and sometimes grim, the prognosis today for Duchenne muscular dystrophy (DMD) is the best it has ever been. This is because so many new therapies are in the clinical trial process, and some have already been approved. As a result, parents of children…
As a child, I wasn’t around people who used power wheelchairs. Perhaps because my sons were the first people I’d met who were living with Duchenne muscular dystrophy (DMD), or maybe because I’m old enough, power chairs seemed less prevalent when I was younger. After my sons were…
As a mom and caregiver to three sons with Duchenne muscular dystrophy (DMD), my focus is always on someone else, and I tend to slip lower and lower on the priority list. I’ve been thinking about this a lot lately. Since my oldest son, Max, 17, broke…
Nebraska does have big cities. Well, it has two big cities. And the truth is that Omaha, our largest, is smaller than places like Denver, Los Angeles, and New York. If you have not read my column before, we live in Nebraska, a rural state in the middle of…
Three boys with Duchenne muscular dystrophy (DMD), plus one mom, plus three clinic days equals much preparation. On Tuesday, the four of us left our home in Nebraska to drive to Denver for the boys’ neuromuscular clinic visits at Children’s Hospital Colorado. When my boys were younger, getting…
I hope my columns haven’t sounded repetitive lately. I know I’ve mentioned more than once that my oldest son with Duchenne muscular dystrophy, Max, fell and broke his leg almost four weeks ago. But I continue to learn, adjust, and come to realizations that inspire my column. In…
Life feels a little messy right now. It feels like I have no control. As a full-time caregiver to my three sons with Duchenne muscular dystrophy (DMD) and a mother to my seven children, my days are often timed down to the minute and centered around their schedules…
The past week has been difficult. Our oldest son with Duchenne muscular dystrophy, Max, fell last week and hurt his leg. In the past several days, we’ve figured out how to dress him and help him in the shower and restroom. He was doing these tasks independently or…
I have three sons with Duchenne muscular dystrophy (DMD): Max, 17, Rowen, 14, and Charlie, 12. Rowen stopped walking three years ago at the age of 11, after he fell and broke his lower leg. Of course, we did everything we could to encourage fast healing, as we…
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