I Am Not a Superhero for Raising a Child With Pompe Disease
Having a child with a rare disease can certainly be challenging at times, but it doesn’t make us superheroes. We’re often called this by people with typical children or no children at all.
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.
Using social media to connect with other Pompe disease families
Social media is right at our fingertips. Most adults, teenagers, and even preteens are equipped with cellphones or some other device that can access the internet. While the web can be used for many…
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