guilt

Ironically, I feel guilty about my son’s Pompe disease treatment

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…

How to Deal With Guilt as a Rare Disease Parent

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. Because Pompe is a genetic disease, I know I am part of the reason my son…