Pompe disease treatment interrupts my son’s first week of kindergarten

Deciding between school and appointments isn't easy for this mom

Keara Engle avatar

by Keara Engle |

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Today is my son Cayden’s first day of kindergarten — a milestone I’ve been anticipating since he was born. While I’m ready for the break, watching him grow up is bittersweet. Kindergarten feels like such a big step compared with preschool.

The transition should be pretty easy because Cayden met his kindergarten teacher a few months ago and has been excited to return to school. He will also be accompanied by the same nurse he had in preschool, which puts my mind at ease.

Our school district does a staggered start for kindergarten to help ease the children into the newness of school. Each group of kids goes only one day this week, so because Cayden is attending today, he’ll get to enjoy the rest of the week at home.

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Next week will be the first full week of school for the kindergarteners. However, Cayden will only attend for four days. On Tuesday, he will receive his biweekly enzyme replacement infusion to treat his infantile-onset Pompe disease.

The process takes over six hours, requiring Cayden to miss a full day of school. If we waited until he got home, it would be too long of a day for all of us. And I don’t think it’s fair to wait until Saturday or Sunday. What kid wants to spend their weekend stuck inside getting an infusion?

In addition, Cayden had an appointment with his bone and joint specialist scheduled for Wednesday, the day after his infusion. After debating whether to reschedule it, I decided I should. I didn’t want Cayden to miss two days in a row during his first full week of school. This time is crucial for building friendships and establishing a routine. Thankfully, I was able to reschedule Cayden’s appointment for September.

It’s hard to decide between school and appointments, both of which are very important for my son. This time, school was more important, as the appointment isn’t urgent.

I look forward to this school year and what it will bring for Cayden.

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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