caregivers

For the past two weeks, my children and I have been unable to catch a break from the common cold. It all started with my 6-year-old son, Cayden, who brought home an illness from school. It’s inevitable during cold and flu season, but it sure makes for a miserable experience.

Living in Pennsylvania means having to deal with some pretty brutal winters. We do get to experience all four seasons, which is beautiful, but when the cold weather comes, it can be a bit tricky for some folks to handle. My 6-year-old son, Cayden, has always had a hard time…

My 6-year-old son, Cayden, has been using a feeding tube since he was a newborn. Although I feared the tube at first, I’ve learned to be thankful for its benefits. Cayden required a feeding tube as a result of symptoms related to his infantile-onset Pompe disease; in…

I remember the day my 6-year-old son, Cayden, was diagnosed with infantile-onset Pompe disease like it was yesterday. Hearing the news broke me, and I was scared half to death. I had no idea what to expect, and searching the internet didn’t help because I came across a…

Back in May, we made the hard but necessary decision to move to a new place. Our old apartment was just too small for our growing family. Plus, it wasn’t very accessible for my 6-year-old son to navigate with his wheelchair. We were on the hunt for a place that…

Every other week like clockwork, we stay home for a day so my 6-year-old son, Cayden, can receive his enzyme replacement infusion. These infusions are the only treatment option for infantile-onset Pompe disease, the rare disease that Cayden was diagnosed with via newborn screening shortly…

Every month, we receive a package at our house for my 6-year-old son, Cayden, worth almost $14,000. What could cost so much, you might wonder? Life-saving medication. Cayden receives biweekly infusions of Nexviazyme (avalglucosidase alfa), as enzyme-replacement infusions are currently the only treatment option for Pompe disease, which…

Last week, for the first time, I was able to watch my 6-year-old son, Cayden, participate in a field day at school. I remember having field days when I was in elementary school and was excited for Cayden to have a similar experience. Parents were invited to tag along…

My 6-year-old son, Cayden, is no stranger to ear infections. When he was 2, we decided it was time to solve the problem of recurring ear infections once and for all. His otolaryngologist recommended implanting ear tubes. Tubes are pretty common, so I wasn’t overly concerned about the…

At the young age of 16, I gave birth to my now 6-year-old son, Cayden. Like any new parent, I had to learn patience. I was raising a child while I was still a child myself, and it was no easy task. However, I quickly discovered that I would learn…