The adjective “rare” refers to an event, situation, or condition not occurring very often, not found in large numbers, and consequently of interest. For example, Duchenne muscular dystrophy (DMD) is a rare disease affecting approximately 1 in 3,500 male births worldwide. Years ago, on one of the first…
My husband and I have four sons, but I spend most of my energy in this column writing about the three who have Duchenne muscular dystrophy (DMD). I often wonder what the chances are that three of our four sons have the disease? When my oldest son, Max, was diagnosed,…
Living with a rare disease like Duchenne muscular dystrophy is more than doctors’ appointments, medicines, and wheelchairs. It affects every aspect of my family’s life. When I started writing this column, I was afraid I’d have trouble finding something to write about every week, but was encouraged to write about…
No matter who you are, life will throw you seemingly impossible challenges. It will make you question everything. If you believe in God like me, I’m sure you have asked, “Why are you letting this happen to me?” In reading a Christian book titled “Faith That Engages the Culture,”…
January is birthday month at our house. We have four birthdays in January. That’s almost half of our family celebrating their arrivals on the planet in the same month. Our newest addition, our 3-week-old daughter Callie, was born on Jan. 9, joining Rowen, who turned 13 on Jan. 21; Charlie,…
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…
Get regular updates to your inbox.