Columns

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…

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…