Hope is scary, but important in life with Duchenne MD
I forgot how scary hope can be. There was a time, a few short months, when I realized I was giving up. I accepted that Duchenne muscular dystrophy (DMD) would continue to progress…
Party of 9 — Betty Vertin
Betty Vertin is a mother and writer living in rural Hastings, Nebraska, with her husband and seven children. Betty is a caregiver to three sons, Max, Rowen, and Charlie. Her oldest was diagnosed with Duchenne muscular dystrophy in 2010 at 4 years old. The other boys were diagnosed with the same in the following year. Although Duchenne occasionally crashes the party, it has not kept her large family from celebrating and enjoying life. She writes her column in hopes of sharing her family’s experiences with others on a similar journey.
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How my teaching job reminds me that I’m more than a caregiver
I’m more than a caregiver, but it took a recent life change for me to realize that. I’m a mom to seven children I share with my husband, Jason, including three of our…
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Why each stage of DMD progression is uniquely challenging
“The stages of Duchenne.” I remember seeing this heading on many of the websites I obsessively read when I learned that my three sons, Max, 18, Rowen, 14, and Charlie, 12, had Duchenne…
3 tips I found helpful when finding accessible hotel rooms
I’m a small-town girl. I love that I can get from one end of my hometown in rural Nebraska to the other in a few short minutes, that there is never traffic, and that…
The timing, choices, and challenges of managing clinical trials
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…
How much of an emotional toll does DMD take on me as a mother?
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?…
Celebrating a new high school experience for our son with DMD
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…
One of our best parenting tips for families with DMD is to be present
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…
Feeling thankful despite a busy schedule and disappointing news
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…
I’m glad my sons with DMD are not trick-or-treating this year
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…
5 things we’ve learned about finding a good college for a son with DMD
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,…
What I’ve learned after years of attending my sons’ IEP meetings
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.
It took a scare with my child with DMD to see my husband’s support
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…
