Columns

Celebrate? Yes, we do. There was a time when I didn’t think celebrating and Duchenne muscular dystrophy could coexist. I thought a life touched by Duchenne would be voided of happiness, joy, and celebration. I was very wrong. I have since learned that life with Duchenne just makes the…

During Mass on Sunday, the priest talked about an aspect of faith that acts as an infusion for the soul. As a mother of three sons with Duchenne muscular dystrophy (DMD), I loved the analogy and was grateful because I thought it was something my sons would understand. All three…

I’ve had a conversation with my son Rowen, 13, that we continue to revisit, and I feel like it’s something all parents raising kids with Duchenne muscular dystrophy deal with on some level. How do we teach our children to advocate for themselves? My three sons with Duchenne all…

When we think about fighting, we might imagine the Ultimate Fighting Championship ring, where men and women beat each other up in front of millions of fans. Or we might see soldiers firing machine guns, or Darth Vader and Luke Skywalker trading blows with lightsabers. Our minds probably…

I set aside time every week just for me. Every Monday for an hour, I sit in a small chapel at my church. I use the time to read, pray, reflect, or sit in silence. This hour of power fuels my week. I’m currently reading the book “The Return…

This column is my love letter to the cough assist machine. I love the assistive device and what it does for my three sons, Max, Rowen, and Charlie, who live with Duchenne muscular dystrophy (DMD). Twelve years ago, I had no idea what the heck a cough assist machine…

We can all smile, but there’s one type of smile that shows genuine positive emotion and is nearly impossible to fake. The zygomaticus major muscle in the cheek pulls the lips upward while the orbicularis oculi around the eye activate, wrinkling the outside corners of the eyes. It’s true happiness…

My family has had a hectic week. It started out lovely; the entire family, all nine of us, spent a beautiful, springlike day together at the zoo. By Sunday evening, however, we had kids with fevers, coughs, and runny noses. At last count, four of us have come down with…

Living with Duchenne muscular dystrophy has plenty of downsides, such as having to use a wheelchair and a BiPAP machine, dealing with fatigue, and wearing night splints, among other things. But if you’ve read my column for a while, you’ll know I like to look on the positive…

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…