30 Days of MD: Hope Is a Powerful Weapon Against Duchenne

Photo courtesy of Betty Vertin

Day 21 of 30

This is Betty Vertin’s (@bettyvertin) story:

My name is Betty Vertin. I live in Nebraska with my husband and children. My family is big! Three of my sons are living with Duchenne muscular dystrophy (DMD). Their names are Max, 15, Rowen, 12, and Charlie, 10.

The boys were diagnosed in 2010. The diagnosis was very hard for my family. There was no family history and we had never heard of DMD. As the disease progressed over the past 11 years, my husband and I find ourselves fulfilling the dual role of parent and caregiver. It is a role we love and embrace even when it is hard. We truly just love having these boys and feel so lucky to be their parents!

After the shock of the diagnosis wore off and we had a better idea of what we were up against, we decided to focus on the positive. For one, we know we are doing things that have never been done before — clinical trials, new medications, etc. — and we rest in the hope that we are changing the outcome. Hope is a powerful weapon against Duchenne.

The boys are living full lives. Our oldest is an active high school student participating in theater and music, and held down a summer job and plans on attending college. The younger boys manage their school sports teams, take music lessons, and love spending time with family and friends.

We take time to grieve the bumps we hit in the road but prefer celebrating life. Duchenne has taught us that; it has taught us to enjoy the gift that every day is.

Life may look different than the one we had originally planned for, but living is the same. Take our van, as an example. It may be the size of a U-Haul truck so that we can fit three wheelchairs in the back, but we can still roll down the windows and sing to the music at the top of our lungs, just like it’s a rocket red convertible.

Note: Betty Vertin writes the “Party of 9” column for Muscular Dystrophy News.

Muscular Dystrophy News’ 30 Days of MD campaign will publish one story per day for MD Awareness Month in September. Follow us on Facebook and Instagram for more stories like this, using the hashtag #30DaysofMD, or read the full series.