Breaking Bad Lite: Chinese Father Formulates Drugs To Treat Son With Rare Genetic Disease

There is nothing a desperate parent cannot do. Xu Wei, a regular father trying to make ends meet in China, sold electrical sockets online as a small business owner to raise his newborn son. However, the Earth beneath his feet shifted when he found out that his son was suffering from a rare disease.

Father In China Makes Drug To Treat Son With Rare Disease At Home

SCMP

Xu, from Kunming, received the devastating news that his one-year-old son Haoyang had been diagnosed with Menkes Disease, a rare genetic disorder that typically results in death in a matter of years.

Finding out about his son¡¯s condition transformed Xu, who was just a secondary school pass out into a fighter who could do anything to save his son. For those unaware, Menkes Disease leads to symptoms such as seizures, poor physical development, and twisted blood vessels.

The 30-year-old father scavenged every solution he could gather to treat his son. However, he failed to find any alternatives. Xu then decided to take matters into his own hands and decided to use an experimental treatment put to work in the US and turn it into a do-it-yourself project for his son.

What Is Menkes Disease?

SCMP

Back in 1962, scientists first identified the condition. They concluded that the disease was caused by a mutation in the X chromosome affecting a gene called ATP7A. This gene is in charge of distributing copper throughout the human body.

To keep the child alive and kicking, Xu needed to have access to copper injections, which were to be administered daily to the child. However, border controls due to COVID-19 made it impossible for the father to source these injections.

Xu decided to take things into his own hands after a failed experimental treatment in Beijing last year.

First, he reached out to companies, hoping they could make copper histidine for him. But it turned out to be too expensive, and he was told that getting the necessary approvals would take many years. However, he didn't give up and started learning on his own by reading American research papers on how to make copper histidine.

The father decided to make the drugs at home with just 20,000 yuan (Rs. 2.2 Lakh) worth of equipment. After coming up with the drug, Xu first tested it on Rabbits. After they survived, Xu tested it on himself. Once he felt it was safe, Xu injected a small dose into his son and then worked up to a normal dose from there.

Afterward, in an interview, Xu remarked, ¡°The treatment did not make my son better, but it prevented him from getting worse. He spent most of the day lying on his back, but when people tried to tease him, he did smile.¡±

For more trending stories, follow us on Telegram.