Columns

My family stands out. I’ve shared that with you before. The sheer number of children is enough to make us different. But three boys with Duchenne muscular dystrophy (DMD), often seen in their wheelchairs, make us even more for the eye to take in. Standing out was hard…

A 7-mile hike with a 1,000-foot elevation gain was on the schedule for our second day of camping at Point Mugu State Park near Malibu, California. I was with our small Boy Scout Troop 911, which operated out of my elementary school in Huntington Beach. It was a…

My marriage is one of the most important things in my life. Shortly after my sons were diagnosed with Duchenne muscular dystrophy (DMD), I heard a staggering statistic about the divorce rate among DMD parents. Issues like financial strain, stress, exhaustion, depression, and grief can create problems in the…

Every year, many of us commit to resolutions for the new year, but often we find ourselves giving up on them within the first few months. Sometimes even sooner. These new resolutions seek to empower us to make changes in our lives, but it is not how we think about…

Having Duchenne muscular dystrophy gives me plenty of things to worry about, like scheduling doctors’ appointments on time, not knowing when I might lose my ability to do certain actions, and using the bathroom when out with friends, because I know I’ll need help but will be too embarrassed…

Before COVID-19, I used to travel a lot and participate in several in-person meetings and conferences related to Duchenne muscular dystrophy (DMD). Unfortunately, having three sons with DMD is somewhat rare, so I was sometimes shy to share this fact when introducing myself. When I did, the room would often…

Making it to 25 years old is no small feat. It means you’ve survived for a quarter of a century. While 18 is a clear demarcation between childhood and adulthood, 25 makes it even clearer still. I celebrated that moment on my birthday last Friday. Getting this far in life…

In a previous column, I mentioned that my family would be skiing in Winter Park, Colorado, over Christmas break. My sons Max, Rowen, and Charlie, who have Duchenne muscular dystrophy, tried adaptive skiing for the first time. The experience taught us a lot. Traveling with the boys requires…

Being the mother and caregiver of three sons living with Duchenne muscular dystrophy brings a lot of stress. Much of it is everyday stress that I have learned to live with and don’t always notice — like knowing that three of my children have a fatal and incurable disease, and…

I often see posts in Facebook groups and other places asking about what holiday gift ideas people might have for sons with Duchenne muscular dystrophy (DMD). Duchenne can affect different muscle groups, and patients can experience both muscle weakness and problems with muscle control in performing tasks and activities,…