Powering Through Pompe
— Keara Engle

I knew having a child meant that I would lose a lot of sleep, but I didn’t realize the extent of it. Most children sleep through the night by age 4, but my son, Cayden, does not. There are…

This month, we started back up with home-based therapies for my 3-year-old son, Cayden. He receives a few different services, such as physical therapy, occupational therapy, and speech therapy. Each of them is extremely beneficial for Cayden,…

When I became pregnant with my son, Cayden, at the young age of 15, I knew I had to start working as soon as possible. So, the week before I turned 16, I began my job hunt. Getting hired…

Last week, I started the dreaded process of potty training my son, Cayden, who turns 4 years old next month. I realize we started this process a bit later than most parents do, but we have our reasons. Cayden…

My family had managed to avoid being exposed to COVID-19 until recently. Earlier this month, on the same day I got my vaccine booster shot, I was exposed to the virus by my mom. She woke up…

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…

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,…

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…

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…

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…

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…

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.