Father makes his own medicine to save his terminally ill son in China

Xu Wei plays with his son with Menkes syndrome (Photo: AFP).

Haoyang, 2, likely has only a few months to live, but the only drug that can help treat the boy's rare genetic disease has not been found anywhere in China. Meanwhile, the border was closed due to the Covid-19 pandemic, making it impossible for the boy to go abroad for treatment.

Unwilling to watch her son die, Xu Wei created a home lab to develop a cure for his son.

"I really don't have time to think if I should do it or not. It has to be done," the 30-year-old told AFP from his DIY lab in a high-rise apartment building in the southwest. Kunming.

Haoyang has Menkes syndrome, an inherited disorder that affects the metabolism of copper in the body, which is very important for the development of the brain and nervous system. Children with this condition hardly live beyond 3 years of age.

Xu, who had only a high school education and had a small online business before his son became ill, was determined to find a chance to fight the illness to save him.

"Even though he can't move or talk, he still has a soul and can feel emotions," Xu said as he hugged Haoyang.

Haoyang is a toddler and can't talk yet, but he still has a smile on his face as his father puts his hand over his head. Xu's wife takes care of their 5-year-old daughter in another part of the city.

Xu hugs his son in the laboratory (Image: AFP).

After being told that the disease could not be cured and that the only medicine that could help relieve the symptoms was not available in China, Xu began tinkering with research and teaching himself about making medicines.

"My friends and family were all against it. They said it was impossible," recalls Xu.

Most of the literature online about Menkes Syndrome is in English, but Xu is undaunted. He used translation software to understand these documents before setting up a home lab in his father's gym.

Under normal conditions, Xu would go abroad to bring back medicine from specialist centers to Haoyang, but China has closed most of its borders since the start of the Covid-19 pandemic.

Xu realized he had no choice but to make the potion himself.

"At first, I thought it was a joke. I thought it was an impossible mission," said Haoyang's grandfather.

Six weeks after starting the project, Xu made the first dose of copper for his son. He initially tested it on rabbits, before injecting it into his body to test its safety.

"The rabbits were fine and I was fine, so I tested on my son," Xu said. Then he began to gradually increase the dose.

Xu made his own medicine to treat his son's illness in the laboratory

Every day, Xu gives Haoyang a dose of homemade medicine to supply the copper that his body is lacking. The amateur "chemist" claims that some blood tests have returned to normal 2 weeks after starting treatment. However, experts said that Xu's medicine was not actually a definitive treatment for his son's illness.

Xu's story caught the attention of VectorBuilder, an international biotechnology laboratory. This lab is kicking off gene therapy research with Xu for Menkes syndrome.

Xu was also contacted by other parents of children with Menkes disease, who offered him treatment for their children, but Xu refused.

"I can only take responsibility for my child," Xu said, while Chinese health officials said they would not interfere with the operation as long as he only carried out treatment at home.

Due to spending time researching drugs, Xu has little income and relies mainly on her parents. However, the young father still plans to take the exam to study molecular biology at a university and do everything he can to protect his son.

"I don't want him to wait to die in despair. Even if we fail, I still want him to have the right to hope," Xu said.