Why an upcoming play date means so much to our Pompe family

My 5-year-old son, Cayden, had a blast in preschool this year and made lots of new friends. I was nervous he wouldn’t make any because he’s a bit different from the other children in his class. However, I quickly realized I had nothing to worry about.

Cayden has infantile-onset Pompe disease, and one of his most challenging symptoms is muscle weakness. Because of it, Cayden uses a wheelchair and a feeding tube and has difficulty speaking. While he can speak in full sentences now, he’s a bit hard to understand.

Cayden didn’t let his physical differences keep him from making friends. He even found a best friend in a 4-year-old boy. It was so heartwarming to watch them interact with each other.

They’d hug each other at the end of every school day, and they couldn’t get in the car and leave without shouting goodbye across the parking lot. Cayden’s nurse, who attended preschool with him, and I looked forward to their farewell every day because it was just that sweet.

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Everyone had a great time at preschool graduation a few weeks ago, especially the kids. They were eager to sing songs to their families and show off the graduation caps that their teachers made for them.

After the celebration, Cayden’s best friend’s family approached me to ask if we would attend the birthday party that they’re planning for their son in September. Without hesitation, I agreed. We exchanged numbers to keep in touch about the party plans. Cayden is really looking forward to it.

More recently, they reached out to ask if the boys could have a play date. I was told that Cayden’s best friend has been begging to come over to our house and play. I let Cayden know, and he’s eager to make it happen.

This play date will be his first with a child from preschool. He’s been around other children like my younger siblings and some of my friends’ children, but this is different. This friendship is one the boys sought out on their own, which makes it so much more special.

I’m ecstatic for Cayden. Ever since his first day of preschool, those two boys were stuck together like glue, and Cayden has missed his friend over summer break. Cayden’s been asking to play with him, but he can’t go to someone else’s house without me at this time because he requires full-time care.

Thankfully, this little boy’s family has made it a point to allow our children’s friendship to blossom. I was nervous that the boys wouldn’t get to see each other again after school ended, but we’re making sure that doesn’t happen. We can’t wait for the play date!

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.