KUMMING: The two-year-old haoyang is likely for months to life – but the only drug that can help its rare genetic conditions not found anywhere in China and closed boundaries because the covid-19 pandemic means he cannot travel for care .
Instead, his desperate father, Xu Wei, has created a house laboratory to create a drug for the boy itself.
“I don’t have time to think about whether it will do it or not. It must be done,” said the 30-year-old person told AFP from his DIY lab in a high-rise apartment building in Southwest Kunming.
Haoyang has a Minister of Health’s syndrome, genetic disorders that have an impact on how copper – which is very important for the brain and the development of the nervous system – processed in the body.
Patients rarely survive outside the age of three.
But Xu, who only has secondary school education and runs a small online business before his son is sick, determined to give him a chance to fight.
“Even though he can’t move or talk, he has a soul and feels emotion,” he said, holding Haoyang in his lap to give him honey mixed with water.
After being told that this disease cannot be cured and the only drug that can help alleviate symptoms is not available in China, he starts researching and teaching himself pharmacy.
“My friend and family opposed it. They said it was impossible”, he remembered.
Most online documents on the Minister of Health’s syndrome are in English, but underesterred Xu uses translation software to understand it, before setting a house laboratory in his father’s gym.
Finding Copper Histadine can help, he organizes equipment to make it yourself, mix copper chloride hydrated with histidine, sodium hydroxide and water.
Blocked by Covid.
Xu now gave Hamoyang daily doses of homemade drugs, which gave children some copper their bodies to disappear.
Amateur chemists claim that some blood tests return to normal two weeks after starting treatment.
Toddlers could not speak, but he gave a smile confession when his father rested gently on his head.
His wife, who did not want to give his name, cared for their five-year-old daughter in another part of the city.
Minister of Health Syndrome is more common in boys than girls, and an estimated one of 100,000 babies are born with a disease globally in accordance with rare organizations.
There is little information or data available but Xu said the pharmaceutical company has shown a little interest because of treatment “does not have a commercial value and its small user group.”
Under normal circumstances, he will travel abroad to bring back care for Haoyang from specialist centers abroad, but China has mostly covered its limit from the beginning of Covid-19 pandemic.
Xu felt he had no choice but to make it himself.
“At first, I thought it was a joke,” said Grandpa Haoyang Xu Jianhong.
“(I thought) it was a mission that was impossible for him.
But six weeks after throwing himself into the project, Xu produced his first vial from the copper histidine.
To test it he first experimented with rabbits and then injected treatment to his own body.
“Rabbits are fine, I’m fine, so I tried it on my child,” he said.
Convinced, he then began gradually increasing the dose.
But the medicine is not the medicine.
Professor Annick Touutain, a rare disease specialist at the University of Tours Hospital in France, said copper treatment “was only efficient against certain genetic anomalies and if given very early, in the first three weeks of life.”
He said that after that treatment would relieve symptoms, “without causing recovery.”
Xu has accepted that it can “only slow down the disease”.
Gen therapy
His work has caused interest from Vectorbuilder, an international biotechnical lab, which now launched gene therapy research with XU into the Minister of Health’s syndrome.