At 14 years old, she’s completely wheelchair-bound. Her estimated life expectancy? Only 18 years.
“Everyone needs to face death one day,” she said as a matter of fact.
Others around her are disheartened by her story, but this girl thinks she’s lucky. She’s even determined to become an expert in computer game development.
“I won’t give up until I’ve reached my goal. I still want to remain in this world, even if all I can do is see with my eyes!”
That’s Kwan Yi Lai, who suffers from spinal muscular atrophy.

“I feel so lucky.”

At the age of 10, Kwan Yi underwent a high-risk spinal surgery to insert steel plates and bolts to prevent her scoliosis condition from worsening. Anyone watching could feel her suffering, but Kwan Yi had a different opinion. “Compared with Stephen Hawking, I think Hawking was in much more pain. He was perfectly fine at first, and then suddenly one day, he couldn’t stand up. But me? I’ve been like this since I was a child. I’m used to it.”

Kwan Yi’s condition kept going downhill. At first, she couldn’t walk. Then the atrophy spread to her jaw muscles and left hand. Some fingers couldn’t straighten…But Kwan Yi remains optimistic and ambitious. And her dreams are what drive her forward. “I feel like I’m making an exchange…I’m more fortunate than those who can walk but have no dreams.”

 

“Coding games. I feel a sense of pride.”

The word “game” alone would excite Kwan Yi. When it comes to ambition, Kwan Yi has it all figured out. She came across MIT’s game development programmes Scratch and App Inventor by chance a while ago. From then on, she’s been determined to pursue game coding. Her goal is to be admitted into the HKUTS. She has her mind set on becoming a computer game developer. “Creating one thing from nothing. That’s just sacred.”

In Kwan Yi’s world, there have never been empty talks. Last summer, she learnt the basics of web programming such as HTML and CMS. “This summer, I want to learn coding or other programming.”

During our visit, Kwan Yi also showed us a delicately drawn painting. Our editor was totally amazed, “It was so beautiful! I would never have guessed that she made it!” Even Kwan Yi’s mum couldn’t hide her delight in Kwan Yi’s drawing talent. Kwan Yi also likes to play the piano and do digital graphics. She hopes that one day she can create her own computer game using her own illustrations and soundtracks!

“I’ve also changed my English name because the new name has a dark side as well as a bright side.” Kwan Yi likes plot-rich RPG games and jokingly said that the character Chara best represents herself.

 
Kwan Yi likes to use the things she comes across in life as inspiration. She created “Magician A”「魔術師阿達魯多」based on Case Closed’s Kaito Kuroba. She also got inspiration from her mother’s succulent plants to create character “Meat meat”「肉肉」.

 

Near-Death Experience from Flu

Understandably, Kwan Yi had been on the dark side before. During one of her depressed phrases, she thought “My life didn’t really mean much. Only my parents will worry a bit. My friends won’t care.” But that all changed when Kwan Yi was brought to the brink of death during Lunar New Year earlier this year.

That time, Kwan Yi caught the flu. The simple flu almost cost her life. Her muscles atrophied and she couldn’t cough out mucus, causing pneumonia. She had to be admitted to the hospital and relied on equipment for breathing. But there was haemorrhaging in her lungs and the blood clots caused complications to the alveoli. She was in critical condition for three weeks. Her mother nearly lost her daughter.

Dropping bean bags and pushing tennis balls can train hand muscles so that Kwan Yi can at least continue to draw and write.

“I will choose to live, even if my eyes are all that’s left of me.”

“I stayed by her side every day to cheer her up and tell her to ‘Hold on!’” Even though Kwan Yi’s mother was terrified, she’d never given up and took care of her daughter round-the-clock. Kwan Yi’s mother got her motivation from her daughter’s willpower and clear resolve, “I will choose to live, even if all I can do is to see with my eyes.” Kwan Yi also once said, “Mum, don’t worry. I’ll support you in the future.” During those tough times at the hospital, Kwan Yi’s mother would bring this up and remind Kwan Yi of her own promises.

To reduce pain, Kwan Yi was administered morphine. “I was in a coma. I only knew I was on the brink of death when I woke up.” After that incident, Kun Yi finally understood that her mother had been her cheerleader every day. Momentarily, Kwan Yi let down her tough exterior and said, “I know she was devastated. She cried her eyes out. And it hurt.” Kwan Yi could feel her mother’s unconditional love for her, even though she didn’t use those words.

Friends also gave their blessings to her, sending her cards full of encouraging words. “I was so moved when I received it. When I woke up, the sun was shining!” The fact that she is alive and she can dream, that’s the greatest gift of all. At the same time, Kwan Yi realises that her own life is of great importance to those around her.

  

She’s Not a Burden. I Can’t Lose Her.

“She’s not a burden! I’ve never thought of giving up!” Kwan Yi’s mother emphasised repeatedly during our interview. “I used to think that it didn’t matter how long my daughter lived. The most important thing was whether we were living happily. But when that day arrived, I realised I couldn’t accept her leaving…I don’t think she’s a burden. I, on the contrary, think that I can’t lose her. She’s too important.”

A straw shows which way the wind blows. In that tiny room with shiny clear windows. Every time Kwan Yi touches anything, her mother will immediately sanitize her hands carefully to avoid bacteria from threatening her life again.

Life is like a game. There are bound to be bugs.

“I think of myself as a god, creating my people and adding different colours to this world.” Kwan Yi’s favourite thing is computer game development. Perhaps, her life is like a game. As Kwan Yi once said, “There are bound to be bugs in creating a game.” If the bug appears, just accept it. There’s no need to complain. We can use our body’s limited “firearm” to overcome challenges and fight to the end!

Interview and writing by張文意and Rochelle Leung
Edited by Rochelle Leung and Avy Ip
Photography by Sea.Pho.Yea and Colin Lam
Videography by Lifewire, Sea.Pho.Yea, Ken Mok and Ava Chan

This cause's reference number is「3611」.

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