Doctors Need Medical Advice Sometimes, Too
I often have to explain my son Cayden’s rare disease to medical professionals. But sometimes, they need more help than I can offer. While my knowledge of Pompe disease is pretty advanced,…
Powering Through Pompe
— Keara Engle
Keara Engle is located in south-central Pennsylvania and has lived there her whole life. Keara is a single mother and has two little boys, Cayden and Kyree. Her oldest, Cayden, was born in February 2018 and was diagnosed with infantile-onset Pompe disease shortly after. He was the first baby in Pennsylvania diagnosed via newborn screening. She hopes that her column, “Powering Through Pompe,” will bring comfort to those that are also dealing with Pompe disease. She remembers how scary it was when her son was first diagnosed and wants to help guide others through their journey.
My tube-fed son is trying a new blended food product
My 6-year-old son, Cayden, has been using a feeding tube since he was a newborn. Although I feared the tube at first, I’ve learned to be thankful for its benefits. Cayden required a…
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