Finding My People: Three Years with Taiwan's Ventilator-Kids Community

2022: An Online Clay Camp

Thanks to the Taiwan Huanhu Children’s Association for organizing an online summer camp, so kids on ventilators could still do clay crafts from home. My son’s rare disease means he doesn’t have the fine motor control to shape clay, so his sister stepped in to represent him!

The teacher led the class live over Zoom, while my daughter’s hands were livestreamed doing the clay work. My son watched with total focus, grinning the whole time.

2023: Our Third Year at the Christmas Party

This was our third year at the Christmas party hosted by the Taiwan Huanhu Children’s Association, and this time they brought in a balloon artist to entertain the kids.

“Huanhu” — literally “cheering children” — is the association’s own name for kids who depend on ventilators. The little boy at our table was a preemie born at an extremely low birth weight. Amazingly, he’s since come off the ventilator entirely and now breathes on his own. Developmental delay at birth doesn’t mean a child can never catch up.

And then there are kids who will always depend on a ventilator — like my son. So many concerts and sports days hosted by rare-disease foundations, we’ve wanted to attend and simply couldn’t. Ventilator tubing, battery life, and my son’s condition are a constant, ongoing challenge.

Which is exactly why the Huanhu year-end event means so much to us — there’s ventilator and oxygen equipment on-site, somewhere to lay him flat, and it’s easy for us to suction him if we need to. The association put so much care into the gifts and the food, and this year there were plenty of new families and new faces — everyone with their own story, quietly cheering each other on.

I’m grateful that this world is still full of kindness. Thank you to every association and foundation that looks out for families like ours. It’s Christmas Eve as I write this — Merry Christmas to every one of these families.

2025: Rallying Volunteers for a Christmas and New Year’s Party

Last Tuesday, I ran into a group of cosplayers at a department store. Chatting with them, I learned that their volunteer group, the Star Corps, had once performed inside a medical center for sick children.

In that moment, what came to mind wasn’t the bustle of the mall — it was the children who depend on ventilators, day after day, year after year.

For these kids, the size of an oxygen tank and the limits of a ventilator often mean they can hardly leave the hospital or the house, let alone go downtown to meet their favorite characters in person. So, almost without thinking twice, I invited a group of Chiikawa cosplayers to our Christmas and New Year’s party — hoping to bring these kids a kind of joy they rarely get to reach.

The invitation was last-minute, so in the end only Spider-Man and Usagi could make it on Saturday — but their willingness to say yes on the spot moved me more than I can say. Heartfelt thanks to every volunteer who gave their time, so that for one short afternoon, these kids could forget about being sick and just be happy.

More than thirty Huanhu families joined this year — the biggest turnout yet. My deepest thanks to the Huanhu Children’s Association for putting so much heart into this party every single year, giving parents who’ve been fighting this fight side by side a moment to breathe, and giving the kids something at year’s end that’s more than just presents: a memory of being understood, and being blessed.

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If your family in Taiwan is caring for a child who depends on a ventilator or lives with a critical illness, you can find this group here: Taiwan Huanhu Children’s Association (Chinese only)