At my 4-year-old son Cayden’s last appointment with the otolaryngologist (ears, nose, and throat doctor, or ENT), the doctor and…
Articles by Keara Engle
Recently, we had a weird occurrence. For the first time, we had trouble accessing the port of my 4-year-old…
My 4-year-old son, Cayden, had to do a sleep study this month. Although he’s done them before, it’s been…
My 4-year-old son, Cayden, had a routine checkup with his metabolic specialists during a recent Pompe clinic day.
I attended an in-person educational presentation on Pompe disease this month in Hershey, Pennsylvania, that was hosted by…
Last week, my 4-year-old son, Cayden, had a routine checkup with his pulmonary specialist. These visits occur about every six…
Having a child with a rare disease can certainly be challenging at times, but it doesn’t make us superheroes.
If you’re the parent of a child with a rare disease, or if you have a rare disease yourself, you’re…
Infusions of enzyme replacement therapy (ERT) are something my 4-year-old son, Cayden, is used to at this point in his…
If you have a rare disease or are the caregiver of someone with a rare disease, then you’re probably…