December 3, 2021

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China | Xu Wei: A Chinese father builds a lab in his home to try to save his son’s chances of survival – Menkes Syndrome | EC stories | The world

The chances of your child surviving beyond the age of three are very low, but to provide undiagnosed treatment , His father does everything, including setting up a drug lab 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 it Sue Wei Suddenly start a career as a laboratory technician and develop a treatment based on the documents found in English on the Internet.

“I really don’t have time to think about whether or not I can do it. I had to do it.”The 30-year-old believes his laboratory is located in the apartment of a tall building in Kunming, a large city in the southwest. China.

With an angel face, the child laughs when his father taps his nose, but he cannot move on his own, nor can he speak.

However, she exchanged serious glances with her father as he handed her the bottle.

Xu Wei en su labatorio. (Photo: AFP).

“Even though he can’t move or talk, he has a heart and emotions,” says Xu Wei.

Blocked by Govt

There is only one medicine to reduce the symptoms: Copper histidine, which is not found in it China And other countries.

Very rarely, the disease affects one in 100,000 newborns, which does not justify laboratory testing.

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In other circumstances, Xu Wei may have gone abroad to obtain this product, but covid-19 closed the border …

Thus, the 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) and I don’t know very well,” he says.

Xu Wei moves his medical team.  (Photo: AFP).
Xu Wei moves his medical team. (Photo: AFP).

He settled with his parents and converted his father’s small gym into a chemical weapons depot.

“I thought it was a joke,” says Grandpa Xu Jianhong. “It’s an impossible task. He only attended high school …”

One injection daily

But in a month and a half, he makes the first bottle after translating a dozen documents on the Internet, especially in English, using his software.

“I was afraid the accident would happen, so I tested the rabbits and then injected them,” said the chemist’s trainer.

Relax, give the baby the first dose and gradually increase. Currently, Hoyang injects daily, which delivers missing copper to his body.

Xu Wei’s adventure with his son shocked the Chinese media and Netizens.

Xu Wei plays with her son Xu Hoyang, who is diagnosed with Menx Syndrome.  (JADE GAO / AFP).
Xu Wei plays with her son Xu Hoyang, who is diagnosed with Menx Syndrome. (JADE GAO / AFP).

“As a doctor, I’m ashamed of this. It shows that we do not care for these families in both the pharmaceutical industry and the health care system,” admits Huang Yu, deputy director of the Department of Medical Genetics at Peking University.

The father has no illusions about the child’s chances of survival.

“Copper histidine only reduces symptoms. It does not cure, but it slows the progression of the disease,” he admits, adding that some blood tests on the baby were normal two weeks after starting treatment.

Some experts claim that this product is only effective if administered within three weeks after birth.

“Treatment can improve some symptoms, but not cure them,” says Annick Toutain, a specialist in rare diseases at the hospital in Tours, France.

Gene therapy

Unsatisfied with preparing his own treatment, Xu Wei embarks on gene therapy, which gives him some confidence in the development of an experimental genetic vector.

Their mission was to launch the International Biotechnology Laboratory, Vector Builder, to research Menx Syndrome, a “rare disease,” says Bruce Lawn, the company’s chief scientific officer.

“This is the first time we have been involved in the investigation of this disease,” he told AFP. “It was Sue’s courage that prompted us to step down.”

VectorBuilder plans to test Xu vector in monkeys in a few months, and then do clinical trials for little Haoyang “maybe in time”.

“Biological time is almost limitless,” Lawn says of the baby.

Other families who knew of Su Wei’s achievements asked for his treatment. “It is illegal and I answer that I am solely responsible for my son,” he admits.

“My friends and family objected, saying they could not achieve it.”

But he said, “I do not want him to wait for death in despair. Even if it fails, I want my son to have that minimum of confidence, ”he adds.

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