Powering Through Pompe
— Keara Engle

Having two young children has already been quite an experience. They depend on me every single day, though, thankfully, they’re pretty easygoing. I’d been a little nervous about their almost five-year age gap, but the way they’ve formed a…

I wrote a column this spring about my 5-year-old son, Cayden, needing to see an orthopedic specialist again. Well, we finally had that appointment late last month, with a doctor he hadn’t seen before. It didn’t go as…

Last week, we had our first pool day of the summer. I got pool passes for myself and my 5-year-old son, Cayden, who really enjoyed it last year. In fact, he’s been consistently asking to go again. But here…

Last week, my 5-year-old son, Cayden, had his annual checkup with the gastroenterologist. It’s been over a year since we last saw her, but he’s been doing so well with GI issues that she told us we no…

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…

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.

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…

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…

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…

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…

Last week, my 5-year-old son, Cayden, had his first karate class. His preschool class took a field trip to a local karate center. Parents were invited to join in on the fun. While neither of us had ever…

Last week, my 5-year-old son, Cayden, had a checkup with his metabolic doctors during a clinic day for his Pompe disease. This visit was mostly typical of those events and went about as expected. I was thankful for…