Powering Through Pompe – a Column by Keara Engle

I was 16 when I had my son, Cayden, in 2018. Being a teen parent brought its own set of challenges. I had to leave public school and finish high school online. I also lost many friends, because most teenagers like to spend their weekends having fun, not cooped…

I take pride in teaching children about disabilities. The earlier they learn, the better. These small lessons can be very beneficial as children grow up and learn that everyone is different.  My 3-year-old son, Cayden, is only 15 months younger than my little brother, Larry Jr.,…

Every doctor, nurse, and respiratory therapist has to start off somewhere. They don’t just jump right into their position. People trained in these occupations must complete years of medical school, and undergo extensive training at a medical facility.  Over the years, my son, Cayden, 3, has…

My 3-year-old son, Cayden, is nonverbal, which presents some communication challenges. But it isn’t the end of the world, because there are many different forms of nonverbal communication that can be used when someone is unable to speak. Cayden has infantile-onset Pompe disease, which has caused…

I often have to explain my son Cayden’s rare disease to medical professionals. But sometimes, they need more help than I can offer. While my knowledge of Pompe disease is pretty advanced, there are some questions I just don’t have answers to.  Cayden, 3, has been…

The holiday season is upon us again, which has me thinking about the many times in the past couple years that my 3-year-old son, Cayden, and I have missed holidays due to emergencies. Cayden has infantile-onset Pompe disease, which has landed us in the hospital more times than I care…

A rare disease is not always visible. Just because someone may look “fine” on the outside doesn’t mean that they don’t have struggles they face daily because of their disease. Pompe disease is one of those diseases. Pompe disease can onset any time throughout a person’s…

Every time I experience something scary with my 3-year-old son, Cayden, it really takes a toll on my mental health. While this is to be expected, it’s certainly not easy to deal with.  I fell into a deep depression after Cayden was diagnosed…

Last week, I experienced every parent’s worst nightmare. When my 3-year-old son, Cayden, woke up the other day, I noticed he was coughing a lot more than usual. I prepared to do what we do every morning: remove his BiPAP machine and deliver his breathing treatments, which consist of…

Thanksgiving and Christmas are often associated with two things: food and family. But what about those who can’t eat? My 3-year-old son, Cayden, is picking up on the fact that he cannot eat orally. With the holiday season just around the corner, I’m worried about how this will affect him.