Powering Through Pompe – a Column by Keara Engle

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, including his mouth and the muscles involved in swallowing. He can’t swallow properly and often would…

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 aren’t easy for him to use, which makes buying gifts a bit difficult. Cayden has…

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 news we were hoping for, I’m relieved that we were able to complete the study in…

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 help than other children their age. As a result, parents must make some sacrifices from time…

A few weeks ago, my 4-year-old son, Cayden, had a rare occurrence in which the implanted port in his chest stopped working. It was a scary situation and the first time it had ever happened. The port is necessary because Cayden receives biweekly enzyme replacement infusions of Nexviazyme…

When you have a child with a rare disease, it can be difficult to find people who are both comfortable and willing to care for them. It’s been a challenge to find people I trust enough to watch my 4-year-old son, Cayden, who has infantile-onset Pompe disease. Cayden…

Over the years, our family has become quite familiar with various types of medical and adaptive equipment. My 4-year-old son, Cayden, has used several medical and adaptive devices to help make his life with infantile-onset Pompe disease a bit easier. However, like any kid would, he eventually outgrows…

At my 4-year-old son Cayden’s last appointment with the otolaryngologist (ears, nose, and throat doctor, or ENT), the doctor and I decided that we should look into getting a new set of tubes for Cayden’s ears. Cayden, who has infantile-onset Pompe disease, showed signs of mild hearing loss during…

Recently, we had a weird occurrence. For the first time, we had trouble accessing the port of my 4-year-old son, Cayden, for his infusion. A port is a small device that’s placed under the skin, usually in the chest, for multiple tasks, including blood draws, infusions, transfusions, IV fluids,…

My 4-year-old son, Cayden, had to do a sleep study this month. Although he’s done them before, it’s been over two years since his last one. At his most recent checkup, Cayden’s pulmonary doctor mentioned that he wanted Cayden to do another sleep study to see how things…