Columns

In August, my 2-year-old son, Alfie, became a big brother. While bringing a new baby into the world is an important life event for any family, when you are already raising a child with LAMA2-related muscular dystrophy, there can be even more to contend with. For about six…

Welcome back to “Hidden Truths,” a column where I seek to describe and express my feelings about my diagnosis of limb-girdle muscular dystrophy. This week, I originally wanted to continue the discussion about questioning everything about my diagnosis and care management, which I discussed last week. However, because…

Being in a power wheelchair, getting fatigued more easily than the average person, and walking with a waddle-like gait are a few bullet points on a long list of Duchenne muscular dystrophy symptoms that make me self-conscious. But more than that, these realities of living with a…

It’s homecoming week here in Nebraska. Our local high school has its homecoming football game today, and the dance is tomorrow. I love homecoming. It’s a time of fun and excitement. The crowd at the football game always seems full of extra energy. The kids get dressed up and…

As I’ve described in my previous columns, knowledge is power. I feel very fortunate to have received my diagnosis of limb-girdle muscular dystrophy when I did. I was beginning physical therapy school and had just come to appreciate the power of questioning and research. That said, the topic of…

I saw a meme today that said, “I need a day between every day to recover from the day before and prepare for the upcoming day.” I could not have identified with anything more today. If you haven’t guessed it yet, I am exhausted. I was a single caregiver and…

Our family has encountered many challenges in our journey with Duchenne muscular dystrophy, and there will be more to come. If I were to ask the question, “What is the hardest part of Duchenne?” in a room full of parents whose children have the condition, there likely would be as…

I started writing for my high school newspaper, The Bolt, when I was 17. Now 24, I’m telling the stories of people who make an impact in their rare disease community for Bionews, the publisher of this site. Over the last seven years, I’ve had the privilege of conducting…

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…