Your child has little chance of living beyond the age of three, but to provide treatment that is not found in China, his father does everything possible, including setting up a pharmaceutical laboratory in an apartment.
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He is not a chemist, he just finished high school and he only speaks Chinese. This did not prevent Xu Wei suddenly start 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 the southwest of China.
With an angel face, the baby smiles when his father strokes his nose, but he cannot move on his own and neither does he speak.
However, she exchanges intense glances with her father when he gives her the bottle.
“Even though he can’t move or speak, he has a heart and emotions,” says Xu Wei.
Blocked by covid
To slow down the symptoms there is only one drug: 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.
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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 says.
He settled in with his parents, and 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 with it,” 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.
“The copper histidinate only alleviates the symptoms. It does not cure it but it can slow down the progress of the disease ”, he admits, adding that some blood tests of the child 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 can improve some symptoms, but not the cure,” says Annick Toutain, a specialist in rare diseases at the hospital in Tours, 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.
Their work has led an international biotechnology laboratory, VectorBuilder, to begin researching Menkes syndrome, “a rare disease among the rare,” 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.”
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, says Lahn.
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” to achieve it.
But, “I don’t want him to wait for death in despair. Even if it fails, I want my son to have that minimum hope ”, he adds.
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