Meet Tonton: She Loves Singing and Dancing

On this blog, I call my daughter “Tonton.” It is a nickname inspired by the gentle pats she gives my back when I cough or choke on a drink. In Japanese, “ton-ton” describes that soft tapping sound.

Tonton loves singing. She enjoys karaoke and dances in her own way.

She also likes games, anime, Disney, and K-pop idols.

She enjoys spending time with animals, and she likes visiting zoos, aquariums, and amusement parks.

The Kindness She Shows Her Family

There are moments when I am reminded of Tonton’s kindness. When I cough or choke on a drink, she gently pats my back.

Once, one of my eyes was bloodshot. The next morning, Tonton got up on her own and asked me:

“Is your eye okay?”

Tonton usually finds it very hard to wake up. Yet she remembered what had happened the day before and asked how I was that morning. That moment has stayed with me.

This caring side is part of who Tonton is. I hope the people who will be involved in her life get to know it, too.

Living with Dravet Syndrome

Tonton has Dravet syndrome. For many years, I have struggled to keep her seizures under control.

Alongside being prepared for seizures, she needs support with many parts of daily life, including taking medication and bathing. As we consider her future home, overnight monitoring and the ability to respond to seizures are essential.

I hope those thinking about her support will also get to know the Tonton who enjoys singing and games, and who shows such kindness to her family.