What a ‘Typical’ Day Is Like for My Son, Alfie, and Me
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…
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What Having Duchenne Muscular Dystrophy Feels Like
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…
Springtime Brings Renewed Opportunity for Activity and Adventure
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…
What I’ve Learned Since My Son’s LAMA2 MD Diagnosis
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…
I’m Ready to Go Forward After My 2nd Dose of the COVID-19 Vaccine
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…
A Hefty Guitar Impacts My Ability to Keep the Music Going
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…
Yes, We Are Rare, but Please Realize We Are Human First
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…
How an Albino Direwolf Named Ghost Made Me Think About Being Rare
“A white wolf in a white wood, silent as a shadow.” – “A Dance with Dragons,” George R. R. Martin I wanted to write something that encompasses the upcoming Rare Disease Day on Feb. 28, and what it means to me. I searched my thoughts to figure out how…
It’s Time for Me to Go Outdoors and Take in the Vitamin D
In the last year, it’s been easy for me to coop myself up in my room and spend the entire day without stepping outside once. I’m either afraid of getting COVID-19 or I get caught up with work, and by the time I…
Welcome to the Castle: Facing Down and Defeating Your Fears
His palms firmly pressed against the pommel, he holds the sword close to his chest. He can feel the heat from the fire on the other side of the stone wall. Fear has no home in this dangerous place, and yet, there it is. It sits on his heart like…
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