Today is my son Cayden’s first day of kindergarten — a milestone I’ve been anticipating since he was born. While I’m ready for the break, watching him grow up is bittersweet. Kindergarten feels like such a big step compared with preschool. The transition should be pretty easy because…
Daily living
When Dwayne Wilson found his career to be too physically demanding with Pompe disease, he had to change trajectories. But now, he says, he finds freedom in a cubicle.
A few weeks ago, my grandparents and I purchased a wagon for my kids. I have a 5-year-old son, Cayden, and a 7-month-old son, Kyree. I’ve wanted a wagon for them for quite some time now, and we were finally able to make it happen. While this may not seem…
My 5-year-old son, Cayden, recently had a swallow study done for the first time since he was 3. Although he cooperated much better this time, we still didn’t get the desired results. When he was younger, Cayden required many swallow studies due to his infantile-onset Pompe disease. Because…
I remember a day when I could play three softball games on a single, sunny Sunday afternoon in Spokane, Washington. As a valuable left-hander, I was allowed to pitch and spend more time on the mound. Granted, these experiences were in my 30s, and the league was co-ed and affiliated…
My 5-year-old son, Cayden, had a blast in preschool this year and made lots of new friends. I was nervous he wouldn’t make any because he’s a bit different from the other children in his class. However, I quickly realized I had nothing to worry about. Cayden has…
Life has been busy lately. My wife and I traveled to Spokane, Washington, in June for our son Devin’s high school graduation, and then our friends from Montana visited us in Southern California for a week. I also saw my neuromuscular specialist and did some routine six-month tests and…
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 bond has been amazing to witness. It’s so sweet to watch…
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…
Enzyme replacement therapy (ERT) for Pompe disease can be safely implemented at home, according to a study in the Netherlands. “Insights from this study can be used as a base for implementing home-based ERT in other countries and to further optimize patient care,” researchers wrote. The study, “Home-based…
Recent Posts
- How my daughter’s medical backpack became a symbol of freedom
- Lung function test may catch respiratory issues in late-onset Pompe
- Wanting to blend in, so the rare care isn’t the first thing that’s seen
- Home enzyme replacement therapy safe for Pompe disease children
- What ‘lucky’ really means for a child with Pompe disease