His son has little chance of living beyond the age of three, but in order to provide him with treatment not found in China, his father goes to great lengths, including setting up a pharmaceutical laboratory in an apartment.
He is not a chemist, since he just finished high school and only speaks Chinese. However, this did not prevent Xu Wei from suddenly starting a career as a laboratory technician and developing a treatment based on documentation he found in English on the internet.
“I really didn’t have time to think about whether to do it or not. I had to do it ”, revealed this thirty-year-old in his laboratory installed in an apartment of a tall building in Kunming, a city in the southwest of China.
With a touching gesture, the baby smiles when his dad He strokes his nose, but he cannot move on his own and he does not speak either. However, he exchanges intense glances with his father when he gives him the bottle.
“Although he cannot move or speak, he has heart and emotions,” Xu Wei stated.
To slow down the symptoms, there is only one drug – copper histidinate, which is not found in China and other countries.
The minor’s illness affects one in 100,000 newborns, which would not justify a laboratory investigation.
In other circumstances, Xu Wei might have traveled abroad to obtain this product, but the COVID-19 closed the borders.
Thus, the director of a start-up invested his savings in expensive laboratory equipment. “I invested between 300,000 and 400,000 yuan (40,000 to 54,000 euros), I don’t know very well,” he explained.
He settled in with his parents, and replaced his father’s small gym with a chemical arsenal. “I thought it was a joke,” Grandfather Xu Jianhong said. “It was an impossible mission. He only studied high school ”, he added.
After a month and a half, Xu Wei manages to produce a first bottle, after consulting more than a dozen documents on the internet, mostly in English, which he translated using software.
“I was afraid of an accident, and then I experimented with rabbits and then injected myself with it,” said the chemist’s apprentice.
Calmly, inject the first doses to the child to increase it gradually. Currently, Haoyang receives a daily injection that provides the copper that his body lacks. This adventure of Xu Wei with his son shocked the Chinese media and netizens.
“As a doctor, I am ashamed of this. It shows that we do not take care of these families, both the pharmaceutical sector and the health system, ”acknowledged Huang Yu, deputy director of the Department of Medical Genetics at Peking University.
The father has no illusions about the baby’s chances of survival. “The copper histidinate only alleviates the symptoms. It does not cure it, but it can slow the progress of the disease, ”argued Xu Wei. In addition, he added that some of the child’s blood tests were normal after two weeks of starting treatment.
Some experts claim that this product is effective only if it is administered within three weeks after birth.
“Treatment may improve some symptoms, but not cure,” said Annick Toutain, a specialist in rare diseases at the Tours hospital, France.
Not content with producing his own treatment, Xu Wei embarks on gene therapy, which offers some hope with the development of an experimental genetic vector.
His work has led to an international biotechnology laboratory, VectorBuilder to start and research Menkes syndrome, “a rare disease among the rare ones,” as the company’s chief scientific officer, Bruce Lahn, sums it up.
“It is the first time that we ventured into the investigation of this disease,” he told AFP. “It was Xu’s courage that pushed us to take the step,” he added.
VectorBuilder He plans to test the Xu vector in monkeys in a few months, and then do clinical trials, “maybe in time” for little Haoyang. “Biological time is almost limit” for the baby, Lahn said.
After learning of Xu Wei’s achievements, other families asked for his treatment. “I answer that it would be illegal, that I am only responsible for my child”, Confessed the father. He also added that “my friends and family were opposed, they said it was impossible” to achieve it.
“I don’t want you to wait for death in despair. Even if I fail, I want my child have that minimal hope, “he concluded.