Guest Voice

I was born in March 1988 with the umbilical cord wrapped around my ankles three times. My heart rate dropped to zero, and the doctors had to do an emergency cesarean section to save me. I still reached all my milestones like a normal baby. When I was 6 years…

My family and I are part of a community of boys, men, and families living with Duchenne muscular dystrophy. That community extends far beyond the U.S., where we live. Families uniquely experience Duchenne in the context of their own country, but there is a commonality in that we all…

We had only been married a few months when my husband woke me in the middle of the night to help him reposition. Half-asleep and irritated, I got up and muttered in the darkness, “I don’t want a husband anymore.” I didn’t remember saying it until he told me the…