Daily living

It was nerve-wracking for my son, Cayden, to be the first child in Pennsylvania diagnosed with infantile-onset Pompe disease via newborn screening. It was four years ago, but I still remember it like it was yesterday. Back then, Cayden’s visits felt very unorganized. However, our team of doctors has…

Last week, we again had to take my son, Cayden, on the dreaded 2.5-hour drive to Philadelphia. We usually make this trip to see all of Cayden’s specialists, but this time we went to the dentist. Plenty of pediatric dental offices are in our area, but none are very…

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 many reasons why sleep is challenging for him, but it doesn’t…

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, who has infantile-onset Pompe disease. He has been getting these different…

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 as a teen can be a challenge in itself, and being…

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 has infantile-onset Pompe disease. Some of the symptoms include muscle…

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…

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…

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.

Flying can be an ordeal for many people with disabilities who rely on wheelchairs to get from point A to point B. Sometimes disabled travelers get to their destination only to realize their wheelchair or scooter is broken or missing. In 2019, the year after airlines were required to release…