enzyme replacement infusions

For years, it’s been evident that my 5-year-old son, Cayden, has extremely sensitive skin. We first noticed the issue during one of his hospitalizations as a baby. We were at the children’s hospital for his enzyme replacement infusion, and when they removed the dressing from his port…

Every other week, my son Cayden, who’s almost 5, receives an enzyme replacement infusion as part of his treatment for infantile-onset Pompe disease. The infusion typically takes about six hours, and although we’re used to the routine, it does make for a very long day. Cayden has…

Recently, my 4-year-old son, Cayden, had an appointment with his metabolic specialist. This doctor manages everything related to his Pompe disease and is part of a team of doctors that diagnosed him when he was just 1 month old. They also oversee everything related to his enzyme replacement infusions.

The holiday season is upon us again, which has me thinking about the many times in the past couple years that my 3-year-old son, Cayden, and I have missed holidays due to emergencies. Cayden has infantile-onset Pompe disease, which has landed us in the hospital more times than I care…