Powering Through Pompe – a Column by Keara Engle

Once a week, my 3-year-old son, Cayden, receives a six-and-a-half-hour infusion for his infantile-onset Pompe disease. I’ve previously shared a look inside his home infusions. However, some people wonder how we can keep my son entertained and content for such a long period of time. As Cayden has…

When my son, Cayden, was diagnosed with infantile-onset Pompe disease, I experienced a multitude of different emotions. One of the biggest things I struggled with was the guilt that came along with his diagnosis. Because Pompe is a genetic disease, I know I am part of the reason my son…

All milestones that children reach are important. However, when my son, Cayden, reaches a milestone, it excites me in ways I can’t even explain. When Cayden was diagnosed with infantile-onset Pompe disease at the age of 1 month, I had no clue what to expect. It didn’t help…

One of the symptoms of Pompe disease is muscle weakness. Due to this, many children who have been diagnosed with infantile-onset Pompe disease will be required to wear some type of orthotic braces that are specially designed by an orthotist. When my son, Cayden, was about 15 months old,…

On Feb. 27, 2018 at 5 a.m., my son, Cayden, entered the world. I had a fairly normal pregnancy, so nothing could prepare me for the events that occurred once he was born. While some of it is a blur, I can still remember the chaos in the room at…

There’s a first time for everything, and this past week was a big first for my family. We loaded up the car and took my son, Cayden, to an amusement park for the first time. While it sure was a lot of fun, there were also some challenges. The first…

As special needs caregivers, we have many responsibilities. From the moment we open our eyes in the morning until the time our heads hit the pillow at night, our primary focus is caring for our child and their needs. While there’s nothing wrong with that, it can be…

Most people love the beach. Whether it’s your first time going to the beach or not, seaside vacations, and traveling in general, are almost always enjoyable. But what if you can’t get to the ocean once you’re there? Disabled individuals must find other ways…

One of the hardest things about being a special needs parent is all of the unknowns. Not knowing what tomorrow will look like makes planning things a bit difficult. I am someone who likes to have plans set in stone. However, I’ve had to adjust,…

One of the first tests my son had as a newborn was called a newborn screening test. This simple yet important blood sample is what started our journey with Pompe disease. The disease was added to Pennsylvania’s newborn screening panel one year before Cayden…