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…

As the school year comes to an end, my 6-year-old son, Cayden, had a kindergarten graduation ceremony. I was so glad I could attend, because Cayden was really looking forward to it. His face lit up when he saw my mother and me in the crowd. My favorite part…

Last week, my 5-year-old son, Cayden, had a checkup with his cardiologist, the specialist who monitors his heart. Cayden has been seeing a cardiologist since he was just 1 month old. Back then, his heart was severely affected by his infantile-onset Pompe disease. It has since corrected…

Over the summer, I lost someone very dear to my heart. My grandfather passed away on July 18 at 75 years old. It took me quite some time to come to terms with his death, even though we knew it was coming. I still find myself in tears when I…

A few weeks ago, my grandparents and I purchased a wagon for my kids. I have a 5-year-old son, Cayden, and a 7-month-old son, Kyree. I’ve wanted a wagon for them for quite some time now, and we were finally able to make it happen. While this may not seem…

Typically, when we think of playgrounds, we envision children running around, having the time of their lives. But this isn’t always the case. For my 5-year-old son, Cayden, it’s a bit hard to enjoy the playground. Cayden is in a wheelchair, so sometimes he has trouble accessing playground equipment.

Whenever it was time to play dodgeball in my elementary school years, I was always picked last. Growing up, I wasn’t physically gifted. I couldn’t run, and I moved slowly. For a kid, my balance was uncharacteristically off. Despite being raised in Southern California, I was unable to surf,…

Anaphylaxis, a severe allergic reaction, occurred in nearly one-third of children with Pompe disease treated with the enzyme replacement therapy Myozyme (alglucosidase alfa) in a small study. However, rapid desensitization regimens — using small doses initially and then increasing the doses — safely re-established tolerance to Myozyme in…

Awhile back, I donated my 4-year-old son Cayden’s used adaptive equipment. He’d outgrown his old stander, so we no longer had any use for it. While I was sad to see these things go — because it’s a reminder that he is getting older and bigger — I was…

My 4-year-old son, Cayden, had a routine checkup with his metabolic specialists during a recent Pompe clinic day. Although we always know what to expect during these visits, that’s both a blessing and a curse. After Cayden sees the doctor and completes a physical therapy session, we then…