Live hard, work hard and dream hard: The story of Tang Xu

Wang Haoling Tang Dafei
This is Tang Xu's sixteenth year in Shanghai. In 2001, Tang's father brought his whole family to Shanghai from Suqian in Jiangsu Province in order to treat his disease.
Wang Haoling Tang Dafei
Shot by Tang Dafei. Edited by Zhong Youyang and Zhang Yang. Special thanks to Andy Boreham.

This is Tang Xu’s sixteenth year in Shanghai. In 2001, Tang’s father Tang Xianzhong brought his whole family to Shanghai from Suqian in Jiangsu Province in order to treat Tang Xu's debilitating disease, Amyotrophic lateral sclerosis (ALS).

ALS is also known as motor neurone disease, which results in difficulty speaking, swallowing, and eventually breathing. No cure for ALS is known. The cause is not known in more than 90 percent of cases, including Tang Xu’s.

Tang’s parents realized he wasn't a normal baby when he had difficulties learning to walk. From a local clinic to big hospitals in Nanjing, Tang was diagnosed with ALS and doctors recommended he be treated in Shanghai.

When little Tang Xu arrived in the big city, he was a primary school student from a migrant workers’ family. Now the 26-year-old is an engineer working for an IT design company and can financially support his family.

Tang says he has so many people he needs to thank who have helped him get where he is today. “First, I want to thank the principals and teachers from Changqiao Middle School and Shanghai Maritime University."

He especially wants to thank Principal Tong from Changqiao Middle School. "Without her help, a severely handicapped boy like me would not have been accepted into a normal school."

On top of that, he feels that Tianping Neighborhood gave him a lot by helping him secure his first job. “That was so important because it helped me to transition smoothly from school into society.”

Live hard, work hard and dream hard: The story of Tang Xu
Holin Wang / SHINE

Tang Xu works as an IT engineer.

When the topic turns to his parents, he says it’s hard to put into words just how he feels.

When Tang Xu was first diagnosed, doctors had advised his parents to give him up. But they didn’t. Tang Xianzhong quit his job to accompany Tang all day while his mother Wang Xiumei often worked three jobs at the same time to support the family.

After some seconds passed, he says: “Actually I know all they did deep down in my heart, and I want to use my whole life time to return the favor when they get older and older.”

Like most people in their twenties, Tang Xu has many hobbies. He likes to do calligraphy, read books and chat and hang out with his friends. “I like writers like Qian Zhongshu, Yu Hua, Lu Xun and Shi Tiesheng," he says. "Especially Shi, who was also handicapped, because he can tell me many thoughts about human nature in wise and far sighted words.”

He also likes science fiction, one example being 'The Three Body Problem', and says that the fantasy and illusion in these kinds of works often give him inspiration in his own work.

And that's partly where Tang's ultimate dream comes from: “I hope I can write a book in the next three to five years.”


Special Reports

Top