Note: This column describes the author’s sons’ experiences with a trial dose of Translarna (ataluren) in the U.S. Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy. I’m a mother to three sons with Duchenne muscular dystrophy (DMD): Max, 18,…
How does Duchenne muscular dystrophy (DMD) affect me as a mom? Am I numb? Have I accepted it? Has DMD killed a piece of my heart? Will it keep taking parts of me? These questions have been weighing on my heart, but it’s been hard to put them into…
It was almost midnight on a Friday night, and for hours, my husband, Jason, and I hadn’t seen or heard from our oldest son, Max, who has Duchenne muscular dystrophy (DMD). In most situations, we would’ve been out of our minds with fear. But that night, we were smiling.
Siblings are the greatest thing I have given my children. They are built-in friends who share the earliest memories, parents, and everything else. As my kids have gotten older, they have many “remember that time” stories they love to laugh about as they reminisce. Duchenne muscular dystrophy (DMD)…
I’m looking out our patio doors at our backyard. I can hear the not-so-gentle Nebraska gales blowing around the wind chimes this morning as I watch leaves drift through the air. I’ve just come in from a fast-paced walk; sweat is sticking to my neck, and my heart rate is…
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…
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…
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