A SHENZHEN father founded a nonprofit social organization in 2016 after his young son was diagnosed with Duchenne Muscular Dystrophy (DMD), a severe type of muscular dystrophy that is currently without a cure, the Daily Sunshine reported Thursday.

    Doctors told the father, Chen Gongsheng, the despairing news that his 4-year-old son had been diagnosed with DMD, a rare disease caused by genetic defects, two years ago. DMD patients usually lose their motor capabilities at around 10 years old and die of heart failure at 25.

    Chen joined a QQ chat group after his son was diagnosed in November 2015. Most of the 300 members in the chat group were family members of DMD patients. They exchanged information and experiences about DMD treatments and hosted meet-ups every now and then.

    In January 2016, Chen came up with the idea of creating a licensed organization to help other DMD patients and gather more people to make a difference.

    He registered MDbaby Center, a nonprofit social organization, in Shenzhen after raising 17,800 yuan (US$2,580) from members of the chat group and getting the support of Han Chunxi, a specialist at Shenzhen Children’s Hospital.

    According to Chen, the center builds exchange channels between patients and doctors, follows up on the latest medical research regarding DMD and seeks help from pharmaceutical companies or medical device manufacturers. “We have new members joining the center almost daily,” he said.

    Wu Jie, mother of a 2-year-old boy, couldn’t stop blaming herself after her son was diagnosed with DMD, because the pathogenic gene that causes DMD comes from the mother’s side. “I would rather exchange my life for my son’s health,” she said.

    Another father, Li Datong, said that many of his wife’s male family members had suffered from muscle diseases, but he hadn’t paid attention to it until his son was diagnosed with muscular dystrophy.

    Wu was outraged when she heard about Li’s story, because she said that Li’s son could have received early treatment and the dystrophy could have been prevented if Li’s wife had told him about her family earlier.

    According to Li, doctors always tell the mothers of DMD patients to persuade their sisters to have the relevant tests done before getting pregnant.

    Wu said many parents of DMD patients avoid mentioning their children’s disease because they don’t want them to be discriminated against by others. She said some schools had refused to enroll these children or asked parents to sign disclaimers before accepting their children.

    Chen said there are many DMD patients in China, and yet it’s difficult for them to get appropriate medical treatment, especially those living in underdeveloped areas. He said that many patients are initially misdiagnosed.

    Although they can’t cure DMD patients due to the existing medical limitations, Chen said that he and other patents won’t give up looking for hope. (Zhang Yang)