Powering Through Pompe – a Column by Keara Engle

Not everybody is a morning person, myself included. Nonetheless, the whole idea of sleeping in went out the window years ago when I had my son Cayden, who’s now age 5. Cayden is a fairly good sleeper, but between his school and appointments, we rarely have a day when we…

Because of his infantile-onset Pompe disease, my 5-year-old son, Cayden, has always relied on a feeding tube for nutrition. For the first six months of his life, he used a nasogastric, or NG, tube. After that, he needed something more permanent, so he underwent surgery to have a…

Last week, my 5-year-old son, Cayden, had a checkup with his cardiologist, the specialist who monitors his heart. Cayden has been seeing a cardiologist since he was just 1 month old. Back then, his heart was severely affected by his infantile-onset Pompe disease. It has since corrected…

This year, Thanksgiving felt quite special. For starters, it was the first time I celebrated with both of my kids. My youngest, Kyree, turns 1 three days after Christmas, and so far, his first holiday season has been so much fun. As I reflected over the holiday, I took some…

Over the summer, I lost someone very dear to my heart. My grandfather passed away on July 18 at 75 years old. It took me quite some time to come to terms with his death, even though we knew it was coming. I still find myself in tears when I…

Oftentimes, parents of children with rare diseases don’t have time to focus on themselves. We have so much on our plates because of everything that our children go through. This causes us to push our problems aside, especially when it comes to mental health. I recently found myself…

When I found out that I was pregnant again, I was ecstatic for my 5-year-old son, Cayden, to become a big brother. However, Cayden has infantile-onset Pompe disease, and I’d be lying if I said that a part of me wasn’t nervous. Because my second child has a…

Last week, my youngest son, Kyree, went in for surgery at only 9 months old. I was a nervous wreck as the date for the procedure got closer and closer. However, I’ve been down this road many times with my 5-year-old son, Cayden, who has Pompe disease. My experiences…

Back in May, I wrote about searching for a more accessible playground for my 5-year-old son, Cayden. My wish seems to have come true, and I couldn’t be happier! A few weeks ago, our town finally reopened one of its biggest playgrounds, which had been closed for a long…

Over the years, I’ve had to make countless hard decisions for my 5-year-old son, Cayden, who has infantile-onset Pompe disease. He’s had surgeries, adaptive equipment, and appointments that haven’t been easy. I guess you could say I’ve gotten used to such decisions over time, but that doesn’t mean…