Columns

Why I’m Donating My Son’s Used Adaptive Equipment

Over the years, our family has become quite familiar with various types of medical and adaptive equipment. My 4-year-old son, Cayden, has used several medical and adaptive devices to help make his life with infantile-onset Pompe disease a bit easier. However, like any kid would, he eventually outgrows…

Addressing My Son’s Mild Hearing Loss With New Ear Tubes

At my 4-year-old son Cayden’s last appointment with the otolaryngologist (ears, nose, and throat doctor, or ENT), the doctor and I decided that we should look into getting a new set of tubes for Cayden’s ears. Cayden, who has infantile-onset Pompe disease, showed signs of mild hearing loss during…

Tales of Traveling to Hawaii With an Electric Wheelchair

A recent Hawaii vacation I took with my wife and friends was incredible, as I wrote in my last column. I’m enthusiastic about sharing even more about my experiences traveling while living with late-onset Pompe disease. I consider myself to be semi-ambulatory and can walk for short periods…

Lab Work Is No Fun for a Child With Pompe

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…