Embracing my son’s ability to inspire people as he handles Pompe

A past supporter returns with an idea to celebrate my 5-year-old's resilience

Keara Engle avatar

by Keara Engle |

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My 5-year-old son, Cayden, has been through more in his few years of life than most adults have in all of theirs. When he was diagnosed with infantile-onset Pompe disease via newborn screening shortly after his birth, I knew his life wouldn’t be easy. But I had no idea what lay ahead for us.

Over the years, Cayden’s had multiple surgeries, procedures, and hospitalizations, as well as endless appointments with a multitude of specialists. Beyond that, his infusions, lab work, and therapies are all part of managing Pompe disease.

That’s a lot for anyone to deal with, let alone a small child. However, Cayden doesn’t let these demands dictate his life, which I believe is what makes him such an inspiration. He finds ways to adapt and still have fun, despite everything he has to go through.

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Recently, someone from our past reached out with an amazing opportunity, though explaining it requires some backstory. You see, I had Cayden when I was very young: I got pregnant at 15 and gave birth to him three months after my 16th birthday. It was no secret that I was going to need help with my pregnancy and a newborn.

I wanted to complete high school badly, as that had always been a goal of mine. My older siblings never finished; they either dropped out or went for their GED diploma instead. Knowing this, I made it a mission to stay in school and get good grades, to boot.

When I got pregnant the summer after my freshman year, I worried about how I’d manage motherhood while staying in school. Thankfully, my county offered ELECT, a program for teen parents. It assigns a case manager who’s there for your journey every step of the way, from pregnancy through graduation. And the support didn’t stop there.

I’ve kept in touch with my case manager since I graduated in 2019. She’s followed Cayden’s Facebook page all this time and has been a listening ear and support person anytime I needed one. Last week, she got in touch with an amazing idea.

My son, fictionalized

She’s been asked to write a short story about how counselors can help elementary-age children. I can’t share too many details just yet, as the story is still in the works. But she’s chosen to write about Cayden, at least to a degree. It’s fiction, but it’ll be based on true events.

In the story, she’ll guide schoolchildren through meeting a new friend who’s a bit different. The story will incorporate how Cayden uses a wheelchair and an iPad to help him communicate. She asked permission to write about him because he’s such an inspiration, and I just couldn’t turn down her offer.

I can’t wait until it’s finished because I’m so excited to see how the story turns out! It feels amazing to know that my son’s journey with Pompe disease is being used to help spread awareness and inspire others. It almost makes all of the unfortunate obstacles he’s had to go through worth it.

I hope that as time goes on, Cayden can continue to give others hope and motivation, not only with Pompe disease but with life in general.

Note: Pompe Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pompe Disease News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Pompe disease.


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