Powering Through Pompe
— Keara Engle

A few weeks ago, I discussed how we were eyeing a medication switch to Nexviazyme (avalglucosidase alfa) for my 4-year-old son, Cayden. But switching to this new drug may not be as easy…

When my 4-year-old son, Cayden, goes to the doctor, it’s usually to see one of the many specialists for his infantile-onset Pompe disease. While they are helpful and the appointments are necessary…

It’s no secret that COVID-19 has caused a lot of issues for not just the United States, but the entire world. Because of the pandemic, for example, we’ve recently been experiencing issues getting the…

When you have a child, you have so many concerns and thoughts. One came up soon after I had my son, Cayden, four years ago. He was diagnosed with infantile-onset Pompe disease at just…

A few days ago, my 4-year-old son, Cayden, visited one of the specialists that he sees less frequently: the otolaryngologist, or ear, nose, and throat (ENT) doctor. Cayden’s been seeing this doctor since…

I’m no stranger to our local urgent care clinics and hospitals. Usually, my 4-year-old son, Cayden, is the patient. Last week, however, it was my turn to need medical help. I had an unexpected…

When strangers notice the differences between my son, Cayden, and other 4-year-olds, they usually have a lot of questions. While I genuinely don’t mind taking the time to educate and inform people about infantile-onset…

Infantile-onset Pompe disease has caused a lot of challenges for my 4-year-old son, Cayden. Until recently, he was never able to communicate with us verbally. We depended on a few different types of…

It was nerve-wracking for my son, Cayden, to be the first child in Pennsylvania diagnosed with infantile-onset Pompe disease via newborn screening. It was four years ago, but I still remember it like…

Recently, my 4-year-old son, Cayden, had an appointment with his metabolic specialist. This doctor manages everything related to his Pompe disease and is part of a team of doctors that diagnosed him when…

Last week, we took my 4-year-old son, Cayden, to the cardiologist, one of the many specialists who help manage Cayden’s complex medical needs. He has been visiting the cardiologist since he was diagnosed…

Last week, we again had to take my son, Cayden, on the dreaded 2.5-hour drive to Philadelphia. We usually make this trip to see all of Cayden’s specialists, but this time we went…