Watching My Family’s Excitement Over My Son’s Progress

Keara Engle avatar

by Keara Engle |

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switching therapists | Pompe Disease News | family reunion | main graphic for the column

Family reunions are big and important events on my dad’s side of the family. Not long ago, my grammy (grandmother) got to host our first family reunion in two years. We usually have a family reunion every year, but during the COVID-19 pandemic, that didn’t happen.

I was ecstatic when Grammy told me that the reunion was definitely going to happen this year and that it would be the weekend after Father’s Day. I’d taken my 4-year-old son, Cayden, who has infantile-onset Pompe disease, to the family reunion way back when he was just a 1-year-old. A lot has changed with him since then.

My extended family was able to see all of Cayden’s amazing progress, which made me feel overjoyed. At the last reunion we attended, he was still so young and wasn’t even able to talk. Now, everyone was ecstatic to hear his voice and watch him use his talker/iPad to communicate.

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Cayden enjoyed playing and hanging out with some of the other kids there, as well. He passed a ball back and forth, played with Hess toy trucks, and acted like his normal silly self. He got to see my older cousin and her son and played a card game with them and my stepmom. It was interesting to see the way his toddler brain worked when it came to helping the adults play the game.

Everyone commented on how smart he’s gotten, and although I may be biased, I have to agree. He knows so much for his age and was showing off by singing the ABCs, counting, and identifying colors. I appreciate it when people take the time to sit down and see how much my son knows because there is so much going on inside his tiny little mind. And given the chance, he’s happy to tell you about it!

Most of the family keeps up with us via social media and the phone, but when they get to see Cayden’s progress live and in action, it means a lot. We’ve had so many scares with Cayden, especially in the past year with his hospitalizations and cases of pneumonia. So to see him healthy and happy after everything he’s been through is truly a miracle to everyone.

I wish our family was able to get together as a whole more often, but it’s just not possible. We all live in different areas and have such busy lives. It’s understandable that we can’t get together more often, but it’s still a bit upsetting. However, I appreciate the time that we do get to spend together and can’t wait for everyone to continue seeing Cayden’s progress in the years to come. He’s more than his rare disease, and I’m so proud of him for making that known!


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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