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My oldest son, Max, was diagnosed with Duchenne muscular dystrophy (DMD) in 2010, when he was 4. The doctor told us to expect that he’d need help with all of his activities of daily living in his teens and that he would die in his early 20s. Max turns…

Turning 30 last month was a significant milestone in my Duchenne muscular dystrophy (DMD) journey. For years, my care has revolved around keeping my vital functions strong enough to sustain a body whose muscles continue to wither with every passing second. Having lived with DMD since birth, I’ve witnessed…

Last weekend, my husband and I cleaned out our storage unit. My husband loves that unit, while I feel like we need one so that we don’t accumulate too much stuff around the house. We started renting it two years ago when we were hosting our oldest son’s high…

I have a growing list of limitations, as a result of my facioscapulohumeral muscular dystrophy (FSHD), my blindness, and other injuries from a long-ago head-on collision with a drunk driver. My wife, Wendy, and my daughter Jill, who are my primary caregivers, provide essential help every day: preparing meals,…

We are on the brink of November, and it’s beginning to turn cold here in Nebraska. My husband and I are debating whether we should turn the heat on. I say yes. He says no. Each morning before school is a frenzy as we search for jackets our children can’t…

This Saturday, I turn 30. My birthday lands on the same day that many of us in Singapore, where I live, will wear purple for our annual disability inclusion event, the Purple Parade. In the past three decades, I’ve marked many milestones with Duchenne muscular dystrophy (DMD), a genetic…

I’ve always had a robust sense of humor. Some people have told me that I’m witty and quick to respond to a funny situation while also defusing tense conversations with laughter. I think it’s a piece of my armor that protects me from my rare chronic illness, limb-girdle muscular…

In the past couple months, I’ve had more medical challenges than usual. My right arm hasn’t been working well, leading to some additional struggles with activities of daily living. In June, what I thought was a bug bite appeared on the knuckle of my right middle finger. It would swell…

Moms worry about their children. As a mother of seven — Lexi, 24; Max, 19; Chance, 18; Rowen, 16; Charlie, 14; Mary, 11; and Callie, 3 — I know firsthand what it’s like to be anxious and concerned about kids. My children’s ages span 20 years — another thing to…

A couple weeks ago, I co-emceed the Zero Project Asia Pacific Symposium 2025 with my girlfriend, Amanda. The event, a collaboration between SG Enable and the Zero Project, took place at Enabling Village, a community space here in Singapore designed for accessibility. The symposium gathered leaders in Asia to share ideas…