Xu Wei is a man from China who you’re doing everything you can to save your child’s life, who has little chance of living beyond three years. The treatment he needs is not found in the Asian country, and that led the man to install a pharmaceutical laboratory in an apartment.
Even though he is not a chemist and barely finished high school, Xu Wei suddenly started the laboratory technician career with the aim of developing a treatment based on documentation in English that he found on the Internet, which is also a challenge, since he only speaks Chinese.
“Really I didn’t have time to think about whether to do it or not. He had to do it, “says the thirty-year-old from his laboratory installed in an apartment in a tall building in Kunming, a large city in southwest China.
“Even though he can’t move or speak, he has a heart and emotions,” Xu Wei says of his son. The symptoms of your disease can only be slowed down with one drug: copper histidinate., which is not found in China or other countries.
The disease that affects the child is suffered by only one in every 100,000 newborns, so no major laboratory investigations are carried out to find cures.
In other circumstances, Xu Wei could have traveled abroad to obtain this product, but the covid-19 pandemic and the consequent closing of borders forced this director of a start-up to invest 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 settled in with his parents, and replaced his father’s small gym with a chemical arsenal.
Xu Jianhong, the boy’s grandfather, confessed that when he saw what his son was trying to do, he thought “it was a joke.” “It was an impossible mission. He only studied high school.”, he pointed.
After consulting more than a dozen documents from the Internet, most of which were in English and had to be translated, Xu Wei managed to produce a first jar in just a month and a half.
“I was afraid of an accident, and then I experimented with rabbits and then injected myself “says the chemist’s apprentice, who has already injected the boy with the first doses and plans to gradually increase them.
Currently, Haoyang receives a daily injection that provides the missing copper to his body. but the father has no illusions about the baby’s chances of survival.
“Copper histidinate it only relieves symptoms. It does not cure it but it can slow down the progression of the disease, “he admits, 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 can improve some symptoms, but not the cure,” says Annick Toutain, a specialist in rare diseases at the Tours hospital, France.
Not content with producing his own treatment, Xu Wei embarked on gene therapy, which offers some hope with the development of an experimental genetic vector.
His work has led an international biotechnology laboratory, VectorBuilder, to begin researching the Menkes syndrome, “a rare disease among 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 the agency. 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.