The switch to at-home infusions of enzyme replacement therapy (ERT) — made necessary due to the COVID-19 pandemic — had a positive effect on people with Pompe disease and their families, a new study has found. “Our data underline that new therapeutic solutions are possible for chronic diseases…
Daily living
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,…
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…
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 done karate before, it certainly was fun. I really enjoyed spending…
“Every Move Counts” is a message that’s stuck with me in recent days, helping me build a healthier view of my exercise goals and limitations. That was a theme of International Pompe Day on April 15, reaffirming that no matter how big or small, every move does…
Until last year, my 5-year-old son, Cayden, rarely talked. He said a few words here and there, but they were hard to understand and limited to about five to 10 words total. His struggles with speech stem from his infantile-onset Pompe disease. Children diagnosed with this form of…
My 5-year-old son, Cayden, is no stranger to enzyme replacement infusions. He’s been getting them on either a weekly or biweekly basis since he was only 4 weeks old. It’s currently the only treatment option for Pompe disease, the rare genetic disease he was born with. Fortunately,…
Back in the summer of 2018, when I started experiencing some serious symptoms, I wondered if I had ALS or another similar disorder. I noticed I wasn’t able to stand up from a seated position. If I was sitting on the couch, I’d have to extend my arms…
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