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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 the good report from his doctors. Further, the physical therapist said…

“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…

When I was younger, I never imagined that I’d become a teen mom. I was scared to share with my mom the news that I was pregnant. I didn’t know how she’d react because she’d been a teen mom, too, and that was the last thing she wanted for…

I’m going to be dating myself here, but let’s go for it. Not quite the Stone Age, but around the time “The Flintstones” was on television, I remember watching the “MDA Labor Day Telethon” one year with my parents. I wasn’t sure why we were watching this and not some…

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…

A long time ago, in a galaxy far, far away, I was celebrating 36 years on this planet. I’d just returned from the mountains in my landspeeder when I received a phone call from my sister. My dad, who was five months into his second round 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…

My 5-year-old son, Cayden, recently started a preschool program. When he started going, I was a little paranoid about whether he’d make friends. After a month there, however, he sure has made a few. I was concerned because Cayden has weak muscles from his infantile-onset Pompe disease; it’s…

Typically, my 5-year-old son, Cayden, who has infantile-onset Pompe disease, has no problem going away with family for the weekend. He used to spend weekends with either my grandparents or his paternal grandmother. But that’s changed, as he now refuses to leave my side. It all started a few…