When I went off to school at the University of Southern California (USC), it was the first time, like many other 18-year-olds, that I would be living away from home. It was an especially huge change for me because of my Duchenne muscular dystrophy and my reliance on my…
I’m late to pick up the kids from school a lot now. I haven’t always been this way, though. Last year, I’d arrive 10 minutes early every day and use it for some quiet prayer time. But since having a baby earlier this year, I arrive late to school…
We throw around the word “community” a lot in the rare disease space, but don’t always think about what it really means and how it’s vital for patients, family, friends, and caregivers. I rarely see anyone in a wheelchair in public, let alone a power chair. Growing up, I didn’t…
My family has been on the Duchenne muscular dystrophy (DMD) journey for almost 12 years. During that time, I’ve quietly watched how friendships and making friends have changed for each of my three sons with DMD as they have grown. I’ve traveled farthest down this road with my oldest…
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…
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