How I realized I was doing too much for my sons with DMD
I do too much. You might assume I’m talking about caregiving because you’re reading a column written by a caregiver. And in part, you’re right. But mostly, it’s an admission that I’ve…
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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What success looks like for me as a DMD parent
Parenting is the most challenging job I’ve ever had. When my role as a parent expanded into caregiving for three of my children, challenging didn’t even begin to describe the path that lay in…
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Sometimes living with Duchenne is simply too hard
I love to read, but finding time to sit down with a good book can be challenging in my busy house. As a mom to seven and a primary caregiver to my three sons…
Caregiving for sons with DMD is like being a frog in boiling water
One of my favorite early-summer memories is from when my sons Max and Rowen were younger. Both lovely little boys — one blond-haired and blue-eyed, the other dark-haired and brown-eyed — squealed with laughter…
Living with Duchenne muscular dystrophy and our bundle of Joy
There is joy after a diagnosis of Duchenne muscular dystrophy (DMD). There is joy after the loss of ambulation. There is joy in the midst of watching Duchenne slowly work its progressive,…
Being a parent and caregiver to boys with DMD changed my career path
When I stopped working at a job away from home in 2007, I never imagined it would be a permanent change. I was pregnant with my third child, Chance, who is now 16, and…
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…
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…
