Powering Through Pompe
— Keara Engle

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…

My 4-year-old son, Cayden, has been seen by many different specialists over the course of his life. I often wonder how he feels about all of the medical appointments. At this age, most…

In today’s world, nurses are in high demand, and thus they’re also hard to come by. Because of this, my 4-year-old son, Cayden, who has infantile-onset Pompe disease, is unable to…

Awhile back, I donated my 4-year-old son Cayden’s used adaptive equipment. He’d outgrown his old stander, so we no longer had any use for it. While I was sad to see these things…

One of the first things people notice about my 4-year-old son, Cayden, is his lusciously long locks of hair. While some people love it, others aren’t so ecstatic that he’s a boy with long…

In the United States, every child gets tested for a multitude of rare diseases and conditions at birth. However, each state picks and chooses which rare diseases and conditions they’ll screen for. Pennsylvania, where…

Living with or caring for someone with a rare disease means that life is often hectic. Between the endless appointments with specialists, infusions and other therapies, getting sick, and other responsibilities, it can…

Soon, I will attend a meeting to discuss transitioning my 4-year-old son, Cayden, to elementary school during the next school year. I’m both nervous and excited about the meeting and the transition. I knew…

From the time he was born four years ago until now, my son, Cayden, has struggled with eating orally. Because of his infantile-onset Pompe disease, Cayden has weak muscles all over his body,…

With Christmas right around the corner, I’ve had many people in our family ask what they can get my 4-year-old son, Cayden, for the holiday. A lot of toys aimed at children his age…

My 4-year-old son, Cayden, completed a sleep study in October. We’ve been waiting for his pulmonary specialist to call with the results, and we finally received them. While we didn’t get the…

As parents, we tend to put our children before ourselves — especially when they have special needs. Some of our children require numerous therapies and appointments with specialists. They may also need more…