Chinese set up a laboratory at home to help a child with an incurable disease

In an attempt to offer a treatment that does not exist in China to his son, who has little chance of surviving beyond the age of three, a desperate father decided to set up a pharmaceutical laboratory in his own home.

Even with no higher education and no knowledge of languages ​​other than Chinese, Xu Wei suddenly started his career as a laboratory technician and developing a treatment, based on documents in English he found on the internet.

“I really didn’t have time to think about whether to do it or not. I had to do it,” the father said in his laboratory in an apartment building in Kunming, a large city in southwest China.

Your child has a rare condition, Menkes Syndrome, which affects one in 100,000 newborns and prevents him from moving around on his own and talking.

“Although he doesn’t move or speak, he has heart and emotions,” says Xu Wei.

To alleviate the symptoms there is only one drug: copper histidinate, which is not available in China and many other countries.

As this is a rare case, few laboratories in the world are willing to research this disease.

Under other circumstances, Xu Wei could have sought treatment abroad, but Covid closed China’s borders to the rest of the world. So he was forced to invest all his savings in laboratory equipment.

“I invested between 300,000 and 400,000 yuan [entre 40 e 54 mil euros], I don’t know very well,” he says.

Even without training in chemistry, Xu Wei managed to produce, in about 45 days, the first bottle of the drug, after consulting many materials on the internet, especially in English, which he managed to translate with the help of software.

“I was afraid of an accident, so I tested rabbits and then injected myself,” said the chemist’s apprentice.

Relieved, he started to administer the first doses to the boy, who then gradually increased. Today, little Haoyang receives an injection every day, which gives him the copper that his system lacks.

The story of Xu Wei and his son became a sensation, touching the press and netizens across China.

“As a doctor, I feel ashamed. It shows that we don’t deal with these families, both the pharmaceutical industry and the healthcare system,” admitted Huang Yu, deputy director of the Department of Medical Genetics at Peking University.

Despite his efforts, Xu Wei is under no illusions about the baby’s chances of survival.

“Copper histidinate only alleviates the symptoms. It doesn’t cure the disease, but it can reduce its progress”, he said, adding that the baby’s blood tests were normal, two weeks after starting treatment.

Unwilling to produce his own treatment, Xu Wei has embarked on gene therapy, which offers some hope of a cure with the development of an experimental gene vector.

His work led an international biotechnology laboratory, VectorBuilder, to begin research into Menkes syndrome, “a rare disease among rare ones”, as summarized the company’s scientific director, Bruce Lahn.

“This is the first time we have ventured into researching this disease,” Lahn told AFP. “It was Xu’s courage that drove us to take that step,” he added.

VectorBuilder plans to try Xu’s vector in monkeys in a few months, and then do clinical trials, “maybe in time” to try to save little Haoyang.

“I don’t want him to wait for death with hopelessness. Even if he fails, I want my son to have that slightest hope,” Xu Wei said.