Growing up, I was never good at performing tricks. I couldn’t whistle, I’ve never been able to cartwheel, and I’ve always been terrible at juggling. Now, every day is the hardest juggling act of all. One of the most important aspects of caring for…
I sometimes like to imagine a life in which I don’t have Duchenne muscular dystrophy, a progressive muscle-weakening disease. No boundaries would hold me in. I could travel anywhere I want and write an unlimited number of stories. This is an…
The glint of armor demands attention. The jousting lance was slung to the side of a great black horse. The rider, shield in hand, mounted the stallion and paraded about a wooden bleacher. The horse coolly pulled one leg up, then the other, muscles rolling with each movement.
When Alfie was first diagnosed, I went searching. I needed answers. I needed to know that my little boy would be OK. I searched every website and every social media platform. Some days I got so obsessed that I’d have to force myself to stop.
This is the dirtiest column I have ever written because it’s about poop. And whether you love it or hate it, it’s an especially relevant topic to the Duchenne muscular dystrophy community. Sitting in a wheelchair for long periods and experiencing overall muscle weakness can…
Kriki Cragwalker, a redheaded dwarf from the mountain city of Jagarz Dauk, grasps her enchanted, two-handed greataxe and is circled by a host of ancient green spirits with allegiance to the god Jani. She charges forward toward a horrified hobgoblin. Flanked…
BEEP BEEP BEEP BEEP. My eyes spring open. It’s still dark. It’s not my alarm that I hear. “Wake up!” I say as I roll over and poke my husband. It’s time for him to go to work. This is how…
If you are familiar with the disease Duchenne muscular dystrophy, it’s easy to tell if someone has it. Enlarged calves, a waddling gait, the use of a wheelchair, and in some cases, a puffy face due to steroid use are all visual cues…
It’s been a sedentary, stale winter in the northern U.S. Spring is afoot, and I am abuzz. This time of year, I start to feel the pull to become more active again. This season is prime time for people to get outdoors, and I am no different. In my…
On Oct. 21, 2019, I sat in a doctor’s office with my 11-month-old son, Alfie, and was handed a piece of paper. Nothing was said, nothing was explained — I was just given the paper. This piece of paper included words such as “severe,” “deformities,” “insufficient,” “seizures,” “inability to…
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