A Chinese father could not find drugs to treat his son’s rare genetic disease, so he decided to make them himself
- Xu Wei’s son was diagnosed with Menkes Disease, a rare disorder that usually results in death
- Xu began to manufacture experimental drugs in his home to keep his son alive
Xu Wei was just a father trying to make ends meet and raise his newborn son as a small business owner selling electrical sockets online.
Then Xu, from Kunming, the capital of southwest China’s Yunnan province, received devastating news: His one-year-old son Haoyang had been diagnosed with Menkes Disease, a rare genetic disorder that typically results in death in just a few years.
The diagnoses transformed Xu, a father with secondary school education, into a fighter trying to stave off a disease that leads to symptoms such as seizures, poor physical development and twisted blood vessels.
“We brought him to see a doctor because of his slow development,” Xu said. “He had the sample taken in February to have a full genetic test and got the result in May. I felt devastated but I couldn‘t give up. How could one give up his own child?”
The 30-year-old tried to find all sorts of solutions to treat his son but, failing to find alternatives, ended up taking matters into his own hands by transforming an experimental treatment in the US into a do-it-yourself home remedy for his son.
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