Powering Through Pompe
— Keara Engle

We are no strangers to our insurance company. While it’s been great in most aspects, we still have to battle it from time to time. Unfortunately, this happens quite often with rare…

Being the parent of a special needs child can be difficult in many ways. One challenge is the effect it has on mental health, which makes self-care essential for parents of special needs…

I’ve previously discussed how doctors and nurses can help in difficult times of health crises. But family and friends can be a big help, too. My 3-year-old son, Cayden, has been hospitalized…

Getting a toddler to understand things is a hard enough task by itself. However, trying to get my 3-year-old son, Cayden, to understand the things he has to go through due to his Pompe…

Dealing with stressful situations can be hard for anyone, but I’m especially struggling because my 3-year-old son, Cayden, has been hospitalized since Aug. 5. In my previous column, I mentioned that he had to…

As a rare disease parent, I’ve dealt with many situations. Some are happy, and some are scary. The past week has been one of the hardest by far. It started with a common…

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…

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.

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…

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…

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…

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…