Columns

Last week, I took my 2-year-old son, Alfie, for a walk-through at a local preschool. We are checking out all of the preschools in our area so we can find the best fit for Alfie when he turns 3 and is able to go.  I was…

Up, up, down, down, left, right, left, right, B, A, Start. Cheat codes were a vital part of unlocking certain hidden aspects of old-school video games. Entering these sequences in a specific order on the game controller would unlock otherwise unattainable features. I would use the controller button…

On April 1, I started full time at Bionews, the publisher of Muscular Dystrophy News Today, writing feature stories about the rare disease community. Since I first started writing articles in December 2019, my work has ranged from interviews with advocates, CEOs, and…

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…