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 deathXu began to manufacture experimental drugs in his home to keep his son aliveChina societyZhuang Pinghuiin BeijingPublished: 12:00pm, 15 Oct, 2021Why you can trust SCMP
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?”