“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 of this genetic disorder rarely survive beyond the age of three.
“Even though Xu 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.
The only medication that could help ease symptoms was not available in China. So, he began researching and teaching himself pharmaceuticals.
“My friends and family were against it. They said it was impossible”, he remembers.