“Mommy, hold me. Mommy, hold me.” These were the words I heard repeatedly from my 3-year-old daughter, Callie, during the four days we spent in the neuromuscular clinic with her older brothers last week. It wasn’t normal for her to want to be held. I’ve never traveled with a stroller…

Adolescents and young adults with Duchenne (DMD) or Becker muscular dystrophy (BMD) who have more siblings typically report being better prepared to transition to adult life, a new study has found. Findings show people with DMD or BMD had the most difficulty with activities of daily living, education,…

I don’t want to miss a thing. Yes, as I typed that, I sang the Aerosmith song in my head. It’s the soundtrack to my husband Jason’s favorite movie, “Armageddon.” But more than that, as a special needs parent and caregiver, I find that the lyric plays…

Most days, my husband, Jason, and I take our kids to school in the same van. It’s an excellent time to be with them before school, and I get a nice 10-minute date with Jason after dropping off Charlie, the last of the kids to exit. I was especially…

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,…

It’s tempting to label the siblings of those who have Duchenne muscular dystrophy as the “unaffected siblings.” But I can never seem to get those words out of my mouth. Siblings are indeed affected by Duchenne. In my family, the siblings, Lexi, Chance, and Mary, experience Duchenne daily, even though…

Most weeks, I toss around column ideas with my friends and family, asking them for advice on what they think could be important or interesting for me to write about. Last week, my husband said, “Umm, how about the fact that you’re heavily pregnant and Alfie is about…

A neuromuscular disorder diagnosis will have a profound effect on the whole family. Younger siblings often don’t fully understand what a neuromuscular disorder is or what it means for their brother or sister. MORE: How to talk to your child about their neuromuscular disorder.  It’s best to be upfront and…