Two-year-old Haoyang has likely just months to live — but the only medicine that can help his rare genetic condition is not found anywhere in China and closed borders due to the Covid-19 pandemic mean he cannot travel for treatment.
Instead, his desperate father, Xu Wei, has created a home laboratory to create a remedy for the boy himself. “I didn’t really have time to think about whether to do it or not. It had to be done,” the 30-year-old told AFP from his DIY lab in a high-rise apartment building in southwestern Kunming. Haoyang has Menkes Syndrome, a genetic disorder that impacts how copper — which is crucial for brain and nervous system development — is processed in the body. Sufferers rarely survive beyond the age of three.
But Xu, who has only a high school education and ran a small online business before his son became ill, is determined to give him a fighting chance. “Even though he cannot move or speak, he has a soul and feels emotions,” he said, holding Haoyang in his lap to give him honey mixed in water.
After being told the disease was incurable and the only medication that could help ease symptoms was not available in China, he began researching and teaching himself pharmaceuticals. “My friends and family were against it. They said it was impossible”, he remembers.