(Kunming) Her son is unlikely to pass the age of three. But to provide him with a treatment that cannot be found in China, his father has gone to great lengths: to set up a pharmaceutical laboratory in his apartment.
He is not a chemist and speaks only Chinese. This did not stop Xu Wei from suddenly starting a career as a laboratory technician and producing treatment from material found in English on the internet.
“I didn’t really have time to think about whether to do it or not. It had to be done, ”says the thirty-something in his lab located in a high-rise apartment building in Kunming, a large city in southwest China.
The emergency is called Haoyang, her two-year-old son. When he was almost a year old, doctors diagnosed him with Menkes syndrome, a rare disease that usually kills its victims before three years.
The angel-faced baby smiles furtively when his father runs his hand over his nose, but he cannot move on his own and does not speak.
However, he exchanges intense glances with his father when the latter gives him the bottle for a long time, honey diluted in a little lukewarm water.
“Even though he cannot move or speak, he has a heart and feels emotions,” comments Xu Wei.
Blocked by COVID-19
To slow down the symptoms, a treatment is available: copper histidine. Problem: This supplement cannot be found in China as it is in many countries.
Extremely rare, the disease affects one in 100,000 births – not enough to warrant laboratory research.
Under normal circumstances, Haoyang’s father could have traveled overseas to bring back the precious treatment. But COVID-19 has closed the borders.
Xu Wei, who until then ran a start-up, then improvised as a pharmacist and invested his savings in expensive laboratory machines.
“There are probably 300 to 400,000 yuan (57,000 to 77,000 Canadian dollars), I do not know very well,” he testifies.
Settling in with his parents, he took over his father’s gym and replaced the weight training equipment with his arsenal of chemist.
“At first, I thought it was a joke,” said grandfather Xu Jianhong. “It was mission impossible for him. He only has his high school diploma… ”
One injection per day
In a month and a half, Xu Wei nevertheless managed to produce his first bottle, after having consulted on the Internet more than a dozen documents, mostly in English, which he translated into Chinese with the help of a software.
“I was afraid of an accident, so I carried out experiments with rabbits and then I injected the treatment myself”, reports the apprentice chemist, behind large glasses of glasses.
Reassured, he injects his first doses into the child, before gradually increasing the dosage. Haoyang now receives a daily injection, which gives him the missing copper in his body.
The adventure of Xu Wei and his son moved the Chinese media and Internet users.
“As a doctor, I’m ashamed to see this. It shows that we have not been able to take care of such families, whether in the pharmaceutical sector or in the healthcare system, ”observes Huang Yu, deputy director of the department of medical genetics at Peking University.
As for the dad, he has no illusions about the baby’s chances of survival.
“Copper histidine only relieves symptoms. It does not correct them but can slow the progression of the disease, ”he admits, adding that some of the child’s blood tests have returned to normal two weeks after the start of treatment.
Some experts point out that the preparation is only effective if it is administered within three weeks of birth.
“Beyond that, the treatment nevertheless seems to improve some symptoms […] without allowing a cure, ”said Professor Annick Toutain, specialist in rare diseases at the University Hospital of Tours (France).
Genetical therapy
Not content with having produced his own treatment, Xu Wei embarked on gene therapy, which brings hope to patients, by developing an experimental genetic vector.
Its work has even led an international biotechnology laboratory, VectorBuilder, to initiate research on Menkes syndrome, “a rare disease among rare diseases,” as summarized by the company’s chief scientist, Bruce Lahn.
“This is the first time that we have ventured into research on Menkes disease,” he told AFP. “It was Mr. Xu’s courage that made us take the plunge.”
VectorBuilder plans to move on to experimenting with Mr. Xu’s vector in monkeys in a few months, and then to clinical trials, “maybe even in time” for little Haoyang.
“Biological time is very, very tight” for the child, remarks Bruce Lahn.
Back to school
Informed of Xu Wei’s prowess, other relatives asked him to provide them with his treatment. “I tell them it would be illegal, that I can only be responsible for my child,” he says.
Taken full time by his new job as a chemist and by caring for his son, Xu Wei has little income and relies mainly on his parents to help him.
“My friends and relatives fought my approach, telling me it was impossible,” he says.
Tireless, the latter prepares an exam in order to be able to study molecular biology properly.
Even though he has experienced discouragement, Xu Wei wants to stand firm to protect Haoyang.
“I don’t want him to wait desperately for death. Even if we fail, I want my son to keep hope ”.