His son has little probability of residing past the age of three, however to supply him with remedy not present in China, his father goes to nice lengths, together with establishing a pharmaceutical laboratory in an condo.
He isn’t a chemist, he simply completed highschool and he solely speaks Chinese. This didn’t cease Xu Wei from out of the blue beginning a profession as a laboratory technician and develop a remedy based mostly on documentation present 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,” confides this thirty-year-old in his laboratory put in in an condo in a high-rise constructing in Kunming, a big metropolis in southwest China.
With an angel face, the newborn smiles when his father strokes his nostril, however He can’t transfer by himself and neither does he converse.
However, she exchanges intense glances along with her father when he provides her the bottle.
“Although he cannot move or speak, he has a heart and emotions”, Xu Wei states.
Blocked by Covid-19
There is just one drug to decelerate the signs: copper histidinate, which isn’t present in China and different international locations.
Very uncommon, this illness impacts one in 100,000 newborns, which might not justify a laboratory investigation.
In different circumstances, Xu Wei might have traveled overseas to acquire this product, however covid-19 closed the borders …
Thus, this director of a start-up, invested his financial savings in costly laboratory gear.
“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 along with his mother and father, and he changed his father’s small gymnasium 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 each day injection
But, in a month and a half, he manages to supply a primary bottle, after consulting greater than a dozen paperwork on the Internet, particularly in English, which he translated utilizing software program.
“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 primary doses to the kid, to extend it progressively. Currently, Haoyang receives a each day injection, which offers the lacking copper to his physique.
This journey of Xu Wei along with his son shocked the Chinese media and netizens.
“As a doctor, this makes me ashamed. 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 concerning the child’s possibilities 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, including that some blood checks of the kid had been regular two weeks after beginning the remedy.
Some consultants declare that this product is efficient solely whether it is administered inside three weeks after delivery.
“Treatment can improve some symptoms, but not cure”, says Annick Toutain, a uncommon illness specialist at Tours Hospital, France.
Not content material with producing his personal remedy, Xu Wei embarks on gene remedy, which gives some hope with the event of an experimental genetic vector.
His work has led to a world biotechnology laboratory, VectorBuilder, to start analysis on Menkes syndrome, “a rare disease among the rare,” as the corporate’s chief scientific officer, Bruce Lahn, sums it up.
“This is the first time that we have ventured into the investigation of this disease,” he informed AFP. “It was Xu’s courage that pushed us to take the step.”
VectorBuilder plans to check the Xu vector in monkeys in just a few months, after which do scientific trials, “maybe in time” for little Haoyang.
“Biological time is almost limit” for the newborn, says Lahn.
After studying of Xu Wei’s achievements, different households requested for his remedy. “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” obtain it.
But, “I do not want him to wait for death with despair. Even if he fails, I want my son to have that minimum hope,” he provides.