How Duchenne deters dreams about the future
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…
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.
Featured Post
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…
Read more
Making modifications to curb the exhaustion of high school
Duchenne muscular dystrophy (DMD) is not a one-size-fits-all disease. I have three sons with DMD: Max, 17, Rowen, 14, and Charlie, 12. Each differs vastly from the others, from the speed of disease…
The challenges of seeing my 3 sons with DMD experience ableism
“Vroom, vroom, vroom” trails my son in the hallway at school. “Whoa, there. Do you guys have a license for those things?” an older gentleman says as my family navigates our way through a…
Love is bigger than Duchenne muscular dystrophy
Duchenne muscular dystrophy (DMD) can be all-consuming. It’s so big that it often takes up all the leftover space in a room. However, we’ve had years where life is bigger than Duchenne.
Confronting the past as my oldest son takes senior-year pictures
The first time the words “Duchenne muscular dystrophy” (DMD) were spoken to me, they might as well have been in a whisper. I could barely comprehend the specialist sitting across from me who…
A new gene therapy for DMD offers us a buoy of hope
My journey as a mom of three boys with Duchenne muscular dystrophy (DMD) has had its fair share of highs and lows, with my hope waning during the lows. But now, my hope…
Spending more time with my Duchenne MD kids is bittersweet
The diagnosis of Duchenne muscular dystrophy (DMD) for my sons Max, 17, Rowen, 14, and Charlie, 12, left me with layers of emotions that continue to make their way to the surface…
As a DMD mom, I’m slowly learning to appreciate using a Hoyer lift
In last week’s column, I mentioned that thanks to the encouragement of some fellow Duchenne muscular dystrophy (DMD) moms, I’ve begun using a Hoyer lift with my 14-year-old, Rowen. He’s one…
Feeling inspired, recharged after the Parent Project MD conference
My family spent the end of June attending the Parent Project Muscular Dystrophy (PPMD) annual conference in Dallas. It was the first time I had joined the conference in person since before the…
How Duchenne MD helps my family live better
The toddler was crying, hungry for a snack, standing just behind me as I sliced pieces of watermelon. But I was smiling. The big kids were in the pool, and I knew they’d be…
Wheelchair accessible home renovations are an ongoing project
While the boys are away, it’s time to play! Well, not exactly. My three sons with Duchenne muscular dystrophy (DMD) — Max, 17, Rowen, 14, and Charlie, 12 — are away this week…
Sending my sons to MDA Summer Camp feels different this year
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…
