ABOUT one in 3,500 boys are born with a genetic disease called Duchenne muscular dystrophy, leading to progressive loss of leg and arm functions and usually death in their late 20s, according to the Center for Duchenne Muscular Dystrophy at UCLA in California.

Tang Xu, 24, doesn’t let this deflect his determination to make the most of what life he has.

The city’s Xuhui District resident, who is confined to a wheelchair and dependent on his parents for daily assistance, graduated in June with a degree in computer science from Shanghai Maritime University and now has a job as a website designer and WeChat account coordinator for a local charity.

In a sense, Tang is a poster boy for what’s possible when society supports rather than shuns people with incurable diseases.

“Most children I meet who have muscular diseases are very brilliant,” said Zhu Changqing, founder of the Muscular Dystrophy Association of China. “They just don’t have equal opportunities for education and work.”

There are some 4.5 million people with muscular dystrophy in China, and 50,000 of them live in Shanghai, she said.

Finally diagnosed

Tang was born in a rural village in Jiangsu Province. At age two, his parents noticed that he wasn’t walking properly and often fell over. They took him to various hospitals trying to find out what was wrong. He was finally diagnosed with muscular dystrophy in Nanjing.

Duchenne is the most common childhood form of muscular dystrophy. It is caused by a faulty dystrophin gene located on the X chromosome. As women have two X chromosomes, they may inherit one faulty gene but show no symptoms of the disease. If a boy’s mother is the carrier of the gene, there’s a 50-50 change he will develop the disease.

It is a progressive disease that attacks muscle cells and tissue.

Research is slowly prolonging the lives of sufferers, with some living into their 30s and a few into their early 40s.

“The doctors told us it was incurable,” Xu’s father Tang Xianzhong told Shanghai Daily. “They told us our boy would grow weaker, lose his ability to walk and to breathe properly and then die at an early age.”

But Tang’s parents weren’t quitters. They moved to Shanghai to seek better medical treatment. They worked at menial jobs to keep the family afloat and pay hospital bills.

The Shanghai Education Commission secured a month of free rehabilitation therapy in Huashan Hospital for Tang, but after that, his family couldn’t afford continued treatment.

“Although rehabilitation therapy had made me feel a little better, I knew clearly that my disease was incurable,” Tang Xu said, “So I quit treatment and decided to cherish every day and live as happily and meaningfully as possible.”

“Meaningfully,” to Tang and his parents, meant getting a good education. Tang first attended a primary school for migrant children, near the 10-square-meter room they rented in Xuhui.

After graduation, he wrote to several middle schools, pleading for the opportunity to continue his schooling.

In the letters, he said, “I want to study even if I have nothing to eat or drink.”

His appeal touched Tong Lixian, principal of Changqiao Middle School, who admitted him to school. Tang later attended the high school affiliated with East China University of Science and Technology.

His education meant hard work for Tang’s parents. His father got up at 2am every day to deliver milk before pushing his son to school in a wheelchair. He then remained at home in case his son needed emergency help before it was time to wheel him home from school.

“The school was half an hour’s walk from our home,” his father said. “Sometimes he was so weak he couldn’t sit properly in the wheelchair, and I had to tie him down so he wouldn’t fall out.”

Unbearable situation

The young Tang said he never drank water at school, no matter how thirsty he was, because it was difficult to get to the bathroom. His classmates always volunteered to help him, but he didn’t want to prevail on them too often.

“Only when I was really suffering an unbearable situation, like diarrhea, would I phone my father to come and get me,” Tang said.

He was admitted to the Shanghai Maritime University, where he was given a two-bed dorm room that allowed his father to live with him and help him around campus. His father worked at a car wash; his mother stayed home to work and look after a younger brother.

An alumnus of the university heard about Tang’s story and paid his tuition and boarding fees for four years. Tang never met his benefactor but wrote to him once a year expressing his gratitude.

Tang repaid the kindness with hard work. His class attendance rate was well above average, at 98 percent. He studied until midnight every day, awaking at 6am to prepare for classes. Since his movements were too slow to take notes, he often borrowed classmates’ notes and carefully copied them every night.

By the time he graduated from Shanghai Maritime University, Tang’s hand mobility was reduced to the right forefinger. Despite that, he graduated in the top 10 of his class.

At graduation ceremonies last month, university President Huang Youfang praised Tang’s fortitude and also thanked student volunteers who formed a group called Xu Ri Dong Sheng, or “rising sun,” to help Tang get around campus when his father was unavailable.

Tang said his choice of major was a well-thought-out decision. “I thought it would help me find a job that would allow me to work at home instead of going to an office every day,” he said.

Local authorities in Xuhui helped him find a job with a local charity.

“It is not the first time we have employed a disabled person,” said Li Lei, manager of the charity. “We were surprised how good Tang is with computers I think he will do well in his job.”

The Muscular Dystrophy Association’s Zhu said more needs to be done to help patients and their families.

“Many of our members find work, but they eventually have to quit when the disease deteriorates,” she said.

Zhu said muscular dystrophy is not included in government medical insurance, and many medicines prescribed for the disease are imported and expensive.

Still, there is hope. Tang was the first member of the association to go to college, serving as a role model.

“We need to do more to help this vulnerable group,” Zhu said.

“Fortunately, more people in China are becoming aware of diseases like this and our lawmakers are trying to draft policies to help them.”