Highschooler lives his best life despite rare disability

Highschooler lives his best life despite rare disability

2024-11-10

Tonight we’re meeting Kevin Ku, an 18-year-old highschooler from Taipei. Having sensory motor neuropathy may have weakened his limbs, but never his determination. He skateboards, speaks fluent English, makes viral videos, and on top of all that, he’s also a top performer in school. In this year’s university entrance exam, he got a near-perfect score. How did he manage to do all that? Let’s find out in our Sunday special report.

At the skateboard rink, 18-year old Kevin Ku confidently pushes forward. He even makes reels in fluent English, gaining fans around the world.

At 11-months-old, Ku was diagnosed with sensory motor neuropathy. His free nerve endings began to deteriorate, and soon he could barely move his arms and legs: at his lowest point he could only exert force from the right pinkie. He’s been a wheelchair user since 3rd grade. In middle school a video from abroad showing someone with disabilities on a skateboard piqued his interest.

Lo Ming-huei
Ku’s mother
Actually when he first said he wanted to learn how to skateboard, like all mothers, I thought, “Probably not. You’re not putting yourself in danger.”

Ku Pu
Ku’s father
As parents of a child with disabilities, our realization was that we should try to close the gap between him and other children. As parents, that’s what we should strive to do. So whatever other children can do, I think if our kid wants to as well, then we’ll accept it and support him, no questions asked.

It’s quite an event every time he goes out to skateboard.

Round and round the bandage goes on the fingers and the wrist. Ku’s father said it’s like putting shoes on, except on the hands.

Because his limbs are thinner, no protective gear will fit. Instead, Ku’s father thought of using leather and anti-slip mat, for extra protection.

Lo Ming-huei
Ku’s mother
In the beginning, many people introduced different doctors to us, and we did start to visit them. Some doctors were resolute, saying he’ll definitely end up like this or that. So of course we’d leave the consultation room in tears. We’ve heard too much of the same.

Ku Pu
Ku’s father
When I heard of the diagnosis I went to the riverside park, strolling and feeling very upset. Of course I was. How could I not be?

Instead of giving way to defeat, the family of three decided to take on the challenge. Ku’s mother quit her job, while his father changed to a more flexible role, so that they could offer the most support possible.

His soles and thighs are being tied to the skateboard. It takes a strong core to stay put, while the arms do the rest. For Ku, with barely any strength in the limbs, it took countless tries to finally be able to move like this.

Kevin Ku
Skateboarder
I started skateboarding in 8th grade. Physically speaking, I wasn’t in the habit of exercising then. So after I got on the skateboard I couldn’t stabilize myself with my feet, and I didn’t have much strength in my hands to push forward. So it was like when I was up there I couldn’t push forward, couldn’t skate forward.

Lo Ming-huei
Ku’s mother
When he first got up there, he fell and couldn’t do it. Later we had a new strategy. He’ll try get up there by himself on an electric skateboard first. His father helped him modify the electric skateboard, so he can control the speed he’s being propelled forward by blowing on it.

In the beginning, Ku’s father installed this catheter-like device, which allowed him to control the speed of the electric skateboard with his breath. The Internet wasn’t kind to them.

Ku Pu
Ku’s father
Someone said it’s cheating if he’s not using his own strength, that the modification is not much different from a wheelchair. But then later I thought, “Hmm… true. So what?”

But Ku insisted on using his own hands, feeble they may be. Of course he gets hurt often.

Kevin Ku
Skateboarder
After I started practicing skateboarding, I thought with this extreme sport, others may think it’s impossible for me, but I’ve surmounted the challenge. This gave me a sense of courage for life, and made me think that I may have physical disabilities, but as long as I have the courage to do things, it’ll be a great personal challenge I’ll love.

From her initial hesitation to full support, Ku’s mother has become his Number One fan and his “Instagram mother” capturing every routine.

Lo Ming-huei
Ku’s mother
I know that a mother that worries too much will actually make the child timid; while a mother that has confidence can actually help them gain more courage to try whatever they want to try.

Ku is also a top student at the very competitive Chien Kuo High School. Let’s follow them and see what it’s really like.

He’s now a 12th grader and has his own setup at the back of the classroom. Because his optic nerves have also deteriorated, he only has 0.1 vision even with glasses on. In class, he needs a video magnifier to see what’s being written on the blackboard.

Kevin Ku
Skateboarder
Sometimes on the corner of the blackboard, there’ll be tiny writing that can normally be seen with the naked eye, but for me there’s only a white blob. So I use a video magnifier for assistance, and when needed, I’ll take some relevant notes.

Because his fingers have become deformed, he needs to use both hands to write. Even then each stroke takes every strength in him. But he won’t allow himself to be defeated.

Kevin Ku
Skateboarder
Actually I’ve always been hard on myself. I don’t know why either, but it’s my nature to dislike losing. I hope I can keep improving.

And self-motivated he is. It’s actually an understatement: Ku’s academic performance has stayed at least in the 96th percentile among all his peers. Being a fluent English speaker, he’s even volunteered to teach schoolchildren in rural areas online. He’s admired by many fellow classmates.

Chen Kuan-ting
Ku’s classmate
Many of his achievements are beyond reach for the rest of the class. I give any example, such as full marks for the TOEIC test or 8.0 for the IELTS, or even the Presidential Education Award. All these achievements, even those of us without disabilities cannot do it. I think this spirit of never giving up, I really admire it greatly.

To his classmates, Ku is more resilient and determined than anyone else. He’ll tackle any challenge that comes his way. In 11th Grade, because there wasn’t a school club for students with disabilities, he started one with other Minecraft fans. The Minecraft club was an immediate hit.

Wu Tsung-hsuan
Ku’s classmate
We thought it’d already be great to have around a dozen to join, and if there are 20 to 30 people we’d secretly be over the moon. But wow, we ended up with a full house of 40 registrations.

The boys never run out of conversations. Even being bound to the wheelchair does not stop him from making friends. But he says like many others with disabilities, this didn’t used to be the case.

Kevin Ku
Skateboarder
Actually back in middle school I didn’t have many friends, and to some extent I was also self-conscious.

And because of that, he used to keep to himself, until a stern reminder from his father.

Ku Pu
Ku’s father
I told him, “If you don’t approach others, you can’t expect others to approach you. So if you’re just sitting there waiting for someone to approach you, you’ll become marginalized very easily.” So starting from high school he really began to put in the effort.

Kevin Ku
Skateboarder
I had an epiphany. I may have limited mobility, I may have to use a wheelchair, but even then I’ll push my wheelchair next to others, and try join in their conversation, even for just a word or two.

And others started to join him too. They play table tennis with him as equals. Nothing can stop him.

A classmate puts down another wheelchair for a gentlemen’s game. And no, it’s not staged. This is a genuine depiction of their camaraderie.

Here he’s editing a video behind the desk. Like many youngsters, he enjoys making video content for social media. He’s made clips of skateboarding and study tips. For Ku, ideas are everywhere.

Kevin Ku
Skateboarder
Many Chien Kuo High School students are more than just top academic performers. I hope to show a different side to us. Many people also commented, after seeing my videos, that they didn’t know Chien Kuo students could be so interesting, we’re not just studious nerds.

This year he passed the university entrance exam with flying colors. For the five subjects in the test, he got full marks for four, and near-perfect score for the other one.

What is life but a series of challenges? Here a young boy shows even his disabilities cannot weaken his resolve. By overcoming the limits of his flesh, life is truly full of possibilities.

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