Independence

This summer, for the first time, I made a big decision to reach out for help for my oldest son, Cayden, who is 7 and was born with infantile-onset Pompe disease. A nurse attends school with him every day during the school year, but in the past, I’ve declined…

Most children and adolescents with Pompe disease adapted well to living with the chronic condition and had generally good emotional well-being, according to a small interview study involving patients and caregivers in Europe. Still, patients reported frustrations related to physical disabilities and their social impacts, as well as the…

This summer, I’ve been trying to find fun activities to do with my children. One of our most recent adventures was a trip to the arcade. My 6-year-old son, Cayden, who has infantile-onset Pompe disease, really enjoyed himself, as did his 18-month-old little brother, Kyree. My boyfriend and younger…

Now that summer is here in full force, I’ve been finding things to do with my 6-year-old son, Cayden, and his baby brother, Kyree. We’re now battling a terrible heat wave here in Pennsylvania, which makes going outside miserable. We’ve been experiencing temperatures in the 90s for days on end,…

For the first time ever, my 6-year-old son, Cayden, enjoyed a night of bowling. We discovered a program called Kids Bowl Free. Bowling allies that participate in this program offer kids ages 2-15 two free games every day during the summer. My mom and I took advantage of this amazing…

Life has been a bit hectic lately. My family has many changes coming up, and each one brings its own challenges. I’ve lived in the same town for most of my life, as have my children. But that may soon change. Our family is growing, and we’ll be welcoming another…

Last week was a busy one for our family. In addition to delivering a talk about Pompe disease to my son Cayden’s kindergarten class, we also celebrated his sixth birthday. The week was filled with fun and joy as Cayden was able to celebrate another year of life.

This school year is the first for my 5-year-old son, Cayden. He attended preschool when he was younger, but now he’s in kindergarten at a public school, where things work a little differently. One of the biggest of those differences is transportation. For preschool, parents were required to…

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…

When Dwayne Wilson found his career to be too physically demanding with Pompe disease, he had to change trajectories. But now, he says, he finds freedom in a cubicle.