The not so usual Korean Hero: Yeseo!

We would like you to meet 

Yeseo, a girl from South Korea - our Not So Usual Korean Hero. 

When you think of Korean heroes, KPOP idols or Kdrama actors may come to mind. 

Yeseo is a different kind of hero.

She has a rare disability called Luscan-Lumish syndrome (LLS). In short, LLS is a rare genetic syndrome. A mild to moderate intellectual disability and/or autism spectrum disorder. 

And when we say "rare genetic syndrome": it is REALLY rare. Yeseo is the only one in South Korea living with this disorder. She is also just a kid, growing up, going to school, having friends. But (there is always a "but", isn't there?) because of her disability, she has to work pretty hard to stay healthy.

This doesn't stop her though. She has dreams, a goal.

Let's talk to her!

What does a typical day look like for Yeseo?

My day is... well?

My day starts at home, where I have a healthy Korean breakfast. I usually go to school, just like my friends. Then it’s piano academy for me. I started with piano lessons when I was 6. Compared to my friends, it takes me more time to learn something. I was embarrassed at first, but now I’m fine.

When piano lessons are done, it’s time for swimming. After that, it's dinner time, and I eat some instant food in the car. There are still things I need to do. Either school homework or rehabilitation therapy.

Because of my disability, I have to do cognition exercises, rehabilitation therapy, and fitness and stretch exercises to get stronger. I’m only eight years old, so I only have light training twice a week.

My body needs more attention than that of other kids. I live in a backward area in Korea -- my parents are the reason that I can do all this.

What do you like (to do) when you don't exercise or swim?

I love watching YouTube or TikTok videos, KPOP idols, and playing games. The same things other Korean kids like, I guess.

Because of LLS, my body – like most children with developmental disabilities – is slower to react. For instance, if I fall, it takes me some time to cry. When my friends and I clap our hands three times, I am slower than them. This means that I begin when they are already done.

I love to dance! I still do it, no matter if my bodily sensations are dull. 

I like the Kpop group (G)I-DLE. It's because of them that I'm now trying to grow my hair. Just like them.

My favorite mobile game is "Royal Match”. A lot of people all over the world play this game.

How does having a disability affect you?

I am always on a diet. Food control and exercise will be lifelong friends in my life. The genetic doctor said: "Don't be obese." And, I need to really focus when I do things.

AND you swim, right?! 

We heard you are going to participate in a disabled championship in May. That’s really awesome! What is your goal?

Yes, I'm going to take part in the championship. I even had to submit an athlete's confirmation form to my school to be able to participate.

"Overcoming obstacles! New leap forward!"

I live in a small town, and there are no professional facilities or professional coaches. But I will do my best. I don’t think there is a huge interest in disabled events wherever you live. Especially children's events, even if it's a national competition. BUT… I would like the world to know that there is a disability called Luscan-Lumish syndrome. And that a Korean kid with that disability is participating in a national championship.

I want to win but the championship will only be my fourth time participating in swimming competitions. I am working hard. Leading up to the championship I will do my third competition in April! 

We will cheer you on from a distance, Yeseo!

Is there anything you would like to say to the readers?

Yes. I don't want other moms of kids with this disability to be sad. 

You know, I don't want to just despair. If I just had one more day, I would rather honor that day than cry over the difficulties in my life. I hate it when my mom cries the most. 

And I have a wish.

My mom's wish is to live one day longer than me. But I rather be the one who lives longer – just one day. That’s my big wish.

Thank you Yeseo for doing this Q&A. We wish you all the best in everything you do! And good luck with the national championship.

Let's see Yeseo in action!

Special thanks go out to Yeseo's mom for helping with the Q&A and the translation from Korean to English.