Like many families in the Duchenne muscular dystrophy (DMD) community, we’re preparing to send our three sons with the condition to a weeklong camp for young people with muscular dystrophy. I’ve spent the week preparing everything for Max, 17, Rowen, 14, and Charlie, 12, to attend the…
A couple weeks ago, as I was looking through social media, a memory from several years ago appeared on my timeline. I have three sons with Duchenne muscular dystrophy (DMD): Max, 17, Rowen, 14, and Charlie, 12. In May 2019, the boys and I traveled to Los Angeles to…
One cozy night last September, my parents and I relaxed in the living room after dinner. My father turned to me and asked for a movie recommendation. It’d been awhile since we’d done this — our cherished family tradition of watching movies together on weekend evenings. In 2019, we lost…
Memorial Day weekend has come and gone, and we’re now officially in summer mode at my house. For our family, that means lots of baseball. I have three sons — Max, 17, Rowen, 14, and Charlie, 12 — with Duchenne muscular dystrophy (DMD). But I also have one son,…
He’s getting weaker. That’s the thought that keeps me up at night. Rowen, 14, the second of my three sons with Duchenne muscular dystrophy (DMD), is declining. Rowen has always been the weakest of my three boys with DMD, and the disease has progressed faster for him than for…
If you’ve been reading my column since I started writing for Muscular Dystrophy News Today, you know I recently moved to Pittsburgh from Shanksville, Pennsylvania. Over the past few years, as my facioscapulohumeral muscular dystrophy (FSHD) progressed, I tried physical therapy (PT) twice to regain strength.
The grass is finally green. Fragrance from lilac and other flowering trees fills the air. The fresh blooms brightly contrast the blue sky. These are all signs that spring has sprung and summer is just around the corner. I love seasonal changes in Nebraska. We are fortunate to experience…
Every mom I know in the Duchenne muscular dystrophy (DMD) community has a diagnosis story. When I meet a DMD mama, we often share those stories; it’s a way we get to know each other. Part of my diagnosis tale, for example, is that after my three…
Readers of my column are familiar with my Duchenne muscular dystrophy (DMD) story, which began with my diagnosis in February 1996. My older brother, Isaac, was diagnosed with DMD at birth in August 1991. My family’s DMD story, however, dates back four decades from then, to 1951,…
Years of living with facioscapulohumeral muscular dystrophy (FSHD) have taught me that it’s a balancing act on a high wire. It’s an everyday challenge to keep from falling off one way or another. Overdo it and you spend a day or two paying the price with…
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