IF life were a game of Go, 23-year-old Xie Haitao has undoubtedly faced one of the worst starting positions. He was diagnosed with Spinal Muscular Atrophy (SMA) at the age of 1, which is a rare genetic neuromuscular disorder, with an incidence in Chinese newborns ranging from 1 in 6,000 to 1 in 10,000. To this day, it remains an incurable disease, necessitating prolonged and rigorous treatment to achieve the best possible outcomes. “At the beginning, I would stumble, but gradually, I lost the ability to walk. My mother had to quit her job to take care of me full-time,” he said. When in 2008, his school started a Go hobby club, Xie immediately fell in love with the game. “I love it because this is a game where I can compete on equal terms with able-bodied individuals,” he said. He also engaged in online matches with fellow enthusiasts, accumulating practical experience. And his natural talent and unwavering dedication led him to achieve an amateur 5-dan certification in just one and a half years. Although his condition briefly worsened to the point where he couldn’t even lift a piece, Xie remained unshaken in his hobby. At the age of 18, he found the way to not only overcome adversity but also to thrive — earning his first income by providing online Go tutorials. “Since I was a child, my parents have been worried that I wouldn’t be able to make a living in the future. With a job that sustains me, they worry less,” Xie said. Three years later, a piece of good news brightened his life completely. Following some hard-fought negotiations between the National Healthcare Security Administration and pharmaceutical companies, the SMA drug, Nusinersen, had its cost slashed from 700,000 yuan (US$96,121) per injection to 33,000 yuan in 2021 and was included in the national medical insurance catalog. With insurance coverage, the cost per injection for individuals to shoulder was around 10,000 yuan, making the life-saving treatment accessible to ordinary Chinese families. “I told him not to worry about anything else now. He should come to Beijing, get treatment, and continue his career,” said Wang Yuhui, a professional player who had been in a decade-long online exchange with Xie since 2011. Xie soon received his first dose of medication. Then a multidisciplinary treatment team from Peking Union Medical College Hospital also devised a comprehensive rehabilitation plan for him. After they performed spinal deformity correction surgery on him, Xie improved significantly, and quickly resumed his preparations for the Asian Para Games, where he earned two silver medals for China in Hangzhou. “We are happy for him. Helping patients achieve their dreams is something we take great pride in,” Dr. Dai Yi said. Full of gratitude to those who have cared for and supported him, Xie wanted to pay back their goodwills. In 2014, he established the “Haitao Public Go Class” at a local school for the deaf and mute in his hometown of Xining, Qinghai Province, hoping to introduce more youth to the world of Go. While receiving treatment in Beijing, he also teaches the game to other children with SMA, becoming a mentor to his young friends. Some of them have found joy in Go and plan to continue playing. Despite the arduous challenges he’s faced, Xie wants to continue his career as a Go pro. “If there are opportunities to compete down the road, I’ll seize them. I am eager to improve my skills by competing,” he said. (Xinhua) | 