Hong Kong teen battling rare disease creates AI avatar to ensure his story lives on

A Hong Kong teenager with a rare muscle-wasting disease has developed an AI version of himself in hopes that the digital twin can continue sharing his life story and message of perseverance even after he passes away. Chen Tsz-kin, 17, introduced "AI Tsz-kin" at the University of Hong Kong (HKU) on Sunday, just weeks before his 18th birthday.

Tsz-kin, who has Duchenne muscular dystrophy, was once told that the average life expectancy for someone with his condition is 18 years old. "Life may come to an end, but through different means, AI can allow [my message] to continue," he stated. "Even if one day I am no longer here, I just hope people remember the spirit behind it."

Diagnosed with the condition when he was 1½ years old, Tsz-kin now relies on a wheelchair, back brace, and breathing machine at night due to progressive muscle weakness. Despite his health challenges, he has pursued various experiences, such as traveling to the Kyrgyz highlands, completing a 100km desert expedition, paragliding, and diving.

Tsz-kin's health deteriorated over the past year, with two bouts of pneumonia leaving him concerned about his survival. This experience motivated him to reflect on how his beliefs and experiences could continue even as his physical strength declined. The AI project, which began around 18 months ago with the help of Hong Kong-based visual effects and virtual human company Digital Domain, involved capturing 400 images of Tsz-kin's face and recording his voice and pronunciation over six weeks.

His life experiences and views were also incorporated into the system. At the Sunday event, the AI avatar answered audience questions about Tsz-kin's travels, favorite foods, outlook on death, and relationship with his mother. When asked what he would say to his mother, AI Tsz-kin replied, "Thank you for always taking such good care of me and supporting me.

I know it has been very hard for you, but your love is my greatest motivation." William Wong, chairman of Digital Domain Holdings, explained that the company aimed to create a more personal and conversational avatar than their virtual humans developed for commercial clients. "We are not trying to replace Tsz-kin," Wong stated. "We hope technology can help him share his experiences with more people, while reducing some of the physical burden on him."

Tsz-kin, who plans to study social work, emphasized that the avatar could never replicate the emotional impact of a living person. However, he believed that as long as people remember something he once shared and are inspired not to give up in the face of difficulties, he would have no regrets.