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 chinese 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.
Victims rarely survive past the age of three.
Though Xu just completed high school and ran a small internet business before his kid’s sickness, he is determined to give his son a fighting chance.
“He can’t move or speak, but he still has a soul and feels emotions,” he said, holding Haoyang in his lap and offering him a sip of honey-infused water.
After learning that there was no treatment and that the only medication that could alleviate symptoms wasn’t available in China, he began his studies and developed into a proficient pharmacist.
“My friends and family were against it. He remembers, “They said it was not possible.”
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