There’s nothing a desperate parent can’t do. Xu Wei, an ordinary father trying to make ends meet in China, sold electrical plugs online as a small business owner to raise his newborn son. However, the Earth under his feet changed when he discovered that his son suffered from a rare disease.
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- Father in China makes a drug to treat his son with a rare disease at home
- What is Menkes disease?
- Xu decided to take matters into his own hands after a failed experimental treatment in Beijing last year.
Father in China makes a drug to treat his son with a rare disease at home
SCMP
Xu, from Kunming, received the devastating news that her one-year-old son Haoyang had been diagnosed with Menkes disease, a rare genetic disorder that usually causes death within a matter of years.
Finding out about his son’s condition transformed Xu, who was just a high school blackout, into a fighter who could do anything to save his son. For those who don’t know, Menkes disease causes symptoms like seizures, poor physical development, and twisted blood vessels.
The 30-year-old father sought every solution he could muster to treat his son. However, he could not find any alternative. Xu then decided to take matters into his own hands, deciding to take an experimental treatment put into practice in the US and turn it into a DIY project for his son.
What is Menkes disease?
SCMP
In 1962, scientists first identified the condition. They concluded that the disease was caused by a mutation on the X chromosome affecting a gene called ATP7A. This gene is responsible for distributing copper throughout the human body.
In order to keep the boy alive and kicking, Xu needed to have access to copper injections, which had to be given to the boy daily. However, border controls due to COVID-19 made it impossible for the father to obtain these injections.
Xu decided to take matters into his own hands after a failed experimental treatment in Beijing last year.
First, he approached companies, hoping they could produce 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 did not give up and began to teach himself by reading American research papers on how to produce copper histidine.
The father decided to make the drugs at home with only 20,000 yuan (2.2 lakh rupees) worth of equipment. After devising the drug, Xu first tested it on rabbits. After they survived, Xu tested it on himself. Once he felt he was safe, Xu injected his son with a small dose and then increased to a normal dose from there.
Later, in an interview, Xu commented: “The treatment did not improve my son, but it prevented him from getting worse. He spent most of the day lying on his back, but when people tried to make fun of him, he smiled.”
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Source: vtt.edu.vn