Party of 9 – a Column by Betty Vertin

A Love Letter to the Cough Assist Machine

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…

The Waiting Game Can Be Tough to Play

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…

Who Are the Rarest of the Rare?

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…

Learning to Balance Caregiving and a New Baby

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…

My Sons’ Birthdays Stir Up My Emotions

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,…

Duchenne Gave Us a License to Live Our Own Way

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…

What We’ve Learned About Marriage as DMD Parents

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…

3 Reasons I Love Having 3 Sons With DMD

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…

What I’ve Learned About Adaptive Skiing and Duchenne

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…