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…
On Feb. 19, I received my second dose of the Pfizer COVID-19 vaccine. According to the nurse who gave me the injection and clinical trial results from the biotech company, the vaccine is about 95% effective against COVID-19 within seven to 14 days, a period that ended for…
When I was a kid, music from the likes of Led Zeppelin, Fleetwood Mac, and Jim Croce swirled around the house. The three were staples in my dad’s vast collection of vinyl records. Being from Wisconsin, he stored them in steel-wire milk crates that would leave a metallic odor on…
Rare Disease Day, a global push for rare disease awareness, is less than a week away, on Feb. 28. As someone with a rare disease myself, I’ve heard the word “rare” quite a bit in my life. It’s a beautiful rallying cry…
Get regular updates to your inbox.