Powering Through Pompe
— Keara Engle

At the young age of 16, I gave birth to my now 6-year-old son, Cayden. Like any new parent, I had to learn patience. I was raising a child while I was still a…

My 6-year-old son, Cayden, loves to spend time outdoors, especially at the new accessible park in our town. He also likes to blow bubbles, paint rocks, and throw a ball. He basically enjoys…

A few days ago, my 6-year-old son, Cayden, woke us up with quite a surprise. We were getting everything ready for his biweekly enzyme replacement infusion, the treatment for his infantile-onset…

Last week was a busy one for our family. In addition to delivering a talk about Pompe disease to my son Cayden’s kindergarten class, we also celebrated his sixth birthday. The week…

My 6-year-old son, Cayden, and I plan to put together a small presentation about his infantile-onset Pompe disease for his kindergarten class later this week, in recognition of Rare Disease Day on…

Philips, a company that manufactures and sells respiratory equipment to a big portion of the United States, recently posted a statement saying it was discontinuing “the sale of hospital ventilation products, certain home…

Last week, my 5-year-old son, Cayden, and I spent a few hours preparing for his Valentine’s Day celebration at school. He’s in kindergarten, so it’s the first year that we got to make…

This school year is the first for my 5-year-old son, Cayden. He attended preschool when he was younger, but now he’s in kindergarten at a public school, where things work a little…

My 5-year-old son, Cayden, has been seeing an otolaryngologist, an ear, nose, and throat (ENT) specialist, for years. The first visit was suggested by his metabolic doctors, the ones who manage his…

It’s been a little more than 18 months since my 5-year-old son, Cayden, made the switch to Nexviazyme (avalglucosidase alfa) infusions as the main treatment for his infantile-onset Pompe…

When you become a parent, one of the first things you must learn is patience. Sometimes you’re in a rush to get things done, and then — boom! — the baby is crying or…

In our school district, the first two days of the holiday break were reserved for parent-teacher conferences. I quickly scheduled a meeting with my 5-year-old son Cayden’s kindergarten teacher. Because this year is his…