Powering Through Pompe
— Keara Engle

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…

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…

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…

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…

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,…

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…

My 5-year-old son, Cayden, was really looking forward to starting preschool at the end of February. But after only a week of school, he became sick. While this didn’t really come as a surprise, it was a bit disappointing. I know that colds and the flu can spread like wildfire…

Last week, we celebrated my son Cayden’s fifth birthday. Birthdays are a big milestone for all children, but this year felt extra special for us. I never knew if I would see this day, and I’m so thankful that I did. Cayden was diagnosed with infantile-onset Pompe disease…

Every other week, my son Cayden, who’s almost 5, receives an enzyme replacement infusion as part of his treatment for infantile-onset Pompe disease. The infusion typically takes about six hours, and although we’re used to the routine, it does make for a very long day. Cayden has…

My soon to be 5-year-old son, Cayden, goes through a lot at his young age. Due to his infantile-onset Pompe disease, he has experienced many hardships. One of our current struggles is getting him to let me administer his breathing treatments. One symptom of Pompe disease is breathing problems.