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Like much of the East Coast, we’ve been experiencing poor air quality here in Pennsylvania due to smoke from Canadian wildfires. In my 21 years, I don’t think I can remember a time when our air quality was this bad. Fortunately, we’re in the south-central part of Pennsylvania, so…

Last week, both of my children ended up sick. It started off on Memorial Day when my 5-month-old son, Kyree, developed pink eye. The doctor’s office was closed on the holiday, but I got him seen the next day. Aside from the pink eye, he was acting completely normal and…

Last January, I wrote about how I adapted to having a high-deductible health plan. One way I did that was by putting off physical therapy until I met my deductible. At that point, I’d restart my physical therapy for the year. I hit my deductible in March and…

Last February, my 5-year-old son, Cayden, started a preschool program at one of the local elementary schools. The program would prepare him for kindergarten, which he’ll start this fall. So far, preschool has been amazing for him. A nurse has to accompany Cayden to preschool for several reasons. First,…

When I was diagnosed with late-onset Pompe disease in 2018, I didn’t know what my life would look like moving forward. When I was told the disease had no cure, my mind went into a tailspin, taking me down into a deep, dark place. However, my doctor…

Last week, my 5-year-old son, Cayden, had his annual well-child check with his pediatrician. He wasn’t due for any vaccines, and for the most part, the visit was fairly uneventful. We try to see the same doctor for these appointments, as she’s familiar with Cayden and all of his…

I have this recurring dream where I’m driving a sublime green 2015 Dodge Challenger down the Pacific Coast Highway toward the beach. I call it my “I have no muscle” muscle car. It’s trimmed out in light blue with “Pompe Champ” and “Smashing Pompe” printed on the sides and hood.

Typically, when we think of playgrounds, we envision children running around, having the time of their lives. But this isn’t always the case. For my 5-year-old son, Cayden, it’s a bit hard to enjoy the playground. Cayden is in a wheelchair, so sometimes he has trouble accessing playground equipment.

Back in high school, I had a few friends and many acquaintances. One of those acquaintances, Scott, was close to two of my good friends, Rick and David. Scott and I never hung out, but I knew who he was. After graduation, all of my acquaintances, including Scott, seemed…

Recently, we were putting things in place for a road trip this summer. We’d planned to attend a pediatric Pompe disease conference in July, hosted by Duke University in North Carolina. My grandmother was going to come along with my 5-year-old son, Cayden, and me. However, the conference was…