Columns

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…

When I was a toddler, my parents would sit me up in my highchair in front of a big bowl of broccoli. It was around dinner time, while they were still preparing the food, so I was a very hungry baby. I could only eat the rest of the meal…

My oldest son with Duchenne muscular dystrophy, Max, starts his sophomore year in high school this week. He will be halfway through his high school education by the end of the school year. For a long time, I was afraid to look too far into his future. At diagnosis, a…

I wanted to expand on my last column by delving into the types of questions we should ask when presented with a new ailment, such as muscular dystrophy. I’d like to start with an anonymous quote: “It ain’t what people don’t know that hurts them, it’s what they know…

I came down with a nasty cold two weeks ago, and even though I was sick, felt terrible, and knew I needed to rest as much as possible because I also have Duchenne muscular dystrophy, I was still judging myself for not working toward my looming deadlines. I’ve…

I’m a glass-half-full kind of girl. It’s usually not difficult for me to look on the bright side of life. Recently, I had one of those days where everything felt right. We are on top of my 2-year-old son Alfie’s therapies, he is loving day care, the equipment he…

My kids return to school next week. As always, there is so much to do to get ready. In addition to back-to-school shopping and open house, I have to ensure Max, Rowen, and Charlie, my sons with Duchenne muscular dystrophy (DMD), will be successful and that their school is…

A hostess I am not! Planning a child’s birthday party or hosting a team meal is the extent of my party planning skills. I am usually introverted and quiet, and only a few people will hear me talk much. Writing is my favorite way of communicating, and it has led…

This week, I wanted to visit the reason I started writing this column. However, to describe that rationale, I need to revisit the moments soon after I received my diagnosis. I was diagnosed with limb-girdle muscular dystrophy (LGMD) in the late 2000s. I remember my primary physician calling…

My 2-year-old son, Alfie, lives with LAMA2-related muscular dystrophy. Obviously, it is hard, stressful, and heartbreaking to raise a child with a disability. I wouldn’t wish this condition upon anyone. From his premature birth to his diagnosis, the experience has been a huge learning curve for us, to say…