hospitalizations

Trying to Fit In as a Teenage Rare Disease Parent

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…

Doctors Need Medical Advice Sometimes, Too

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…

Missing Holidays Due to Hospitalizations Takes Its Toll

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…

An Illness Doesn’t Have to Be Visible to Be Real

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…