While growing up in Southern California, I spent nearly every day in the summertime with my friends at the beach. We’d excitedly grab our towels and boogie boards and set out for one of the many beaches within 30 minutes of where we lived. But during all those summers, I…
Ableism
Oftentimes, a person with a rare disease may struggle with day-to-day activities such as walking, talking, eating, and getting dressed. This is the case for my 3-year-old son, Cayden. At the young age of 1 month, Cayden was diagnosed with a very rare genetic disease known as infantile-onset Pompe…
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 time. While it sure was a lot of fun, there were also some challenges. The first…
Recent Posts
- Nighttime breathing issues can emerge even with early Pompe care
- When a medical trip feels like a vacation to a child with rare disease
- Newborn screening finds more presumed LOPD cases than expected
- How I’m building a full life while living with Pompe disease
- Chronic pain affects more than 80% of late-onset Pompe disease patients