His son has little chance of living beyond the age of three, but 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, he just finished high school and he only speaks Chinese. This did not stop Xu Wei from suddenly starting a career as a laboratory technician and develop a treatment based on documentation 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", this thirty-year-old trusts in his laboratory installed in an apartment of a high building in Kunming, a large city in southwestern China.
With an angel face, the baby smiles when his father strokes his nose, but He cannot move by himself and neither does he speak.
However, she exchanges intense glances with her father when he gives her the bottle.
"Although he cannot move or speak, he has a heart and emotions", Xu Wei states.
Blocked by Covid-19
There is only one drug to slow down the symptoms: copper histidinate, which is not found in China and other countries.
Very rare, this disease affects one in 100,000 newborns, which would not justify a laboratory investigation.
In other circumstances, Xu Wei could have traveled abroad to obtain this product, but covid-19 closed the borders …
Thus, this 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 points out.
He settled in with his parents, and he replaced his father’s small gym with a chemical arsenal.
"I thought it was a joke, ”says grandfather Xu Jianhong. "It was an impossible mission. He only studied high school …"
A daily injection
But, in a month and a half, he manages to produce a first bottle, after consulting more than a dozen documents on the Internet, especially in English, which he translated using software.
"I was afraid of an accident, so I experimented with rabbits and then injected myself"says the chemist’s apprentice.
Calmly, inject the first doses to the child, to increase it gradually. Currently, Haoyang receives a daily injection, which provides the missing copper to his body.
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"acknowledges 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.
"Copper histidinate alone relieves symptoms. It does not cure it but it can slow the progress of the disease"He acknowledges, adding that some of the child’s blood tests were normal two weeks after 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", says Annick Toutain, a rare disease specialist at Tours Hospital, France.
Gene therapy
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 begin research on Menkes syndrome, "a rare disease among the rare", as summarized by the company’s chief scientific officer, Bruce Lahn.
"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".
VectorBuilder 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 says.
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 son", he confesses.
"My friends and family were opposed, they said it was impossible" achieve it.
But, "I do not want you to wait for death with despair. Even if I fail, I want my son to have that little hope", apostille.
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