Keara Engle,  —

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 infantile-onset Pompe disease. Pompe disease can lead to hearing loss, so they wanted to…

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 disease. We started seeing improvements almost immediately, but now that he’s been on the new medication…

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 your toddler is yelling your name. At that moment, you have to practically drop what you’re…

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 first in elementary school, it was also my first time attending such a conference. Before…

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…