My son’s first lost tooth prompts reflection, celebration

Despite his struggles with Pompe disease, Cayden is still hitting milestones

Keara Engle avatar

by Keara Engle |

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A few days ago, my 6-year-old son, Cayden, woke us up with quite a surprise. We were getting everything ready for his biweekly enzyme replacement infusion, the treatment for his infantile-onset Pompe disease. When I woke up Cayden that morning to get him prepared for the day ahead, he looked puzzled.

Suddenly, he said, “Mom, look!” and opened his mouth. When he did so, I noticed that a bottom tooth was missing, and there was some dried blood in the area. I asked Cayden where his tooth went, and he shrugged and told me that he didn’t know.

We looked everywhere in his bed, but couldn’t find it. I examined his BiPAP mask, which helps him breathe at night and covers his mouth and nose. However, there was no tooth in the mask. We concluded that it must’ve fallen out overnight, and Cayden accidentally swallowed it.

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I had no idea the tooth was loose, so there was no time to prepare. Cayden was upset that we couldn’t find it. He’d lost his first tooth — literally! He thought the tooth fairy wouldn’t come because he had no tooth to give. I quickly reassured him that she would understand and that the same thing had happened to me as a child with one of my teeth.

A 6-year-old boy angles his head and slightly opens his mouth to show where one of his bottom teeth fell out.

Cayden shows where his tooth fell out. (Photo by Keara Engle)

Lo and behold, the tooth fairy still came that night and everything was fine. Cayden quickly became excited that his first tooth had fallen out. It was heartwarming to see.

Moments like these make me pause. Despite everything Cayden has been through over the years due to his Pompe disease, he still experiences many of the same milestones — like starting kindergarten or losing a tooth — as other children his age.

I am so thankful to share these moments with my son. It almost makes me forget about the horrid events from our past. So many times I wasn’t sure if my son would live to see another day. And now he’s losing teeth and educating his peers about his rare disease. I am proud of all of the progress he’s made over the years.

It’s interesting how something as simple as a lost tooth can make you stop and reflect. I look forward to Cayden losing more teeth and hitting other age-appropriate milestones. Sometimes it’s the little things that matter a whole lot!

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.


Shannon Cahoon avatar

Shannon Cahoon

Congratulations Cayden! And bless you Keara for holding the magic for him and sharing to help others. Please reach out to me via email if you're interested in our magical tooth fairy gifts so you're ready for the next wiggly tooth! I know he would love the magic.


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