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The Long Drive for My Son’s Nexviazyme Infusions Is Worth It

Recently, my 4-year-old son, Cayden, made the long-awaited change to Nexviazyme (avalglucosidase alfa) infusions, a new treatment option for Pompe disease. We have wanted to switch treatments for a while, but faced some insurance challenges that caused a delay. Nevertheless, we finally managed to get him switched, and…

How Well-child Checks Are a Break From Specialists

When my 4-year-old son, Cayden, goes to the doctor, it’s usually to see one of the many specialists for his infantile-onset Pompe disease. While they are helpful and the appointments are necessary for us, I know that not every child is normally seen and followed by so many…