advocacy

When my child was diagnosed with Pompe disease, I realized pretty quickly that understanding the condition was just one part of what we faced. The other part was explaining it to everyone — family, friends, teachers, other parents at the playground, even strangers who noticed something and asked questions…

When my child was diagnosed with Pompe disease, my whole world changed in an instant. Suddenly, I wasn’t just a parent; I had to learn how to be a researcher, a scheduler, an insurance negotiator, a medication manager, and, most of all, an advocate for my child. I always…

“The Pompe Community Diaries” is a series that follows the journeys, musings, and challenges of those in the Pompe disease patient community. This week, I’m introducing Katy Arvidson, who is the current Ms. Wheelchair Alaska USA. Katy is wheelchair- and ventilator-dependent because of Pompe disease. She lives in…

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…

Last week, I sat down with the folks who assisted my 6-year-old son, Cayden, during this past school year. The team included a learning support teacher, his kindergarten teacher, and his three therapists — an occupational therapist, physical therapist, and speech therapist. The purpose of the meeting…

My 5-year-old son, Cayden, will soon be getting a new kindergarten teacher. While this will be a big adjustment for all the children in his class, it will be a bit harder for Cayden, who has some special needs. Cayden’s original teacher recently told us that she has accepted…

My 5-year-old son, Cayden, has been through more in his few years of life than most adults have in all of theirs. When he was diagnosed with infantile-onset Pompe disease via newborn screening shortly after his birth, I knew his life wouldn’t be easy. But I had…

When I was a kid, I liked to build things with Legos and Lincoln Logs. I had Tinker Toys and Erector sets to build cars, cranes, buildings, and more. All of the blocks, bricks, and logs were of different sizes and shapes, and when they were put together, I had…

I’m going to be dating myself here, but let’s go for it. Not quite the Stone Age, but around the time “The Flintstones” was on television, I remember watching the “MDA Labor Day Telethon” one year with my parents. I wasn’t sure why we were watching this and not some…

This past week has been heavy on my heart, with my mind full of anger and frustration. I just want to go to the driving range and hit a bucket of golf balls to release some of the stress. While these feelings are not about my journey, they are…