Having failed to find alternatives, the father of one-year-old took matters into his own hands by turning an experimental US treatment into a do-it-yourself home remedy for his son.
In China, the father of a boy suffering from the dangerous Menkes disease managed to independently create medicine for his son.
Menkes Disease was first identified in 1962. The X chromosome mutation affects a gene called ATP7A, which transports copper throughout the body.
Because the disease is caused by an X chromosome abnormality, males are virtually always affected whereas females have a backup X chromosome.
According to the National Institute of Health (NIH) in the United States, people with the condition generally die at a young age before age of 10.
Xu Wei, a small business owner was shocked when he heard that his one-year-old son Haoyang is suffering from Menkes Disease, a rare genetic disorder that typically results in death in just a few years.
“I felt devastated but I couldn‘t give up. How could one give up his own child?,” said the father.
The 30-year-old researched a range of treatments for his son but, after failing to find alternatives, took matters into his own hands by turning an experimental treatment in the United States into a do-it-yourself home remedy for his son.
With his secondary education, he enrolled in publicly available university courses that taught him how to develop pharmaceutical drugs and maintain quality control. Water is mixed with copper chloride dihydrate, L-histidine, and sodium hydroxide in the procedure. To ensure the accuracy of the measurements, Xu employed a hypersensitive electronic balance.
“I did not go to university, but it doesn’t mean I can’t learn. My son needs me to survive and I will study and try all possible avenues to save him,” Xu said.
“I used translation software because I don’t understand English. Sometimes the translations did not make sense and I would check everything word-by-word. It was complicated, but there were always some clues online,” Xu said.
Xu signed an agreement with a company, which could make the drug based on instructions from the research but it was too costly for him and he decided to make the drugs at his own home with 20,000 yuan (US$3,100) worth of equipment.
First, he tested the drug on rats, then on himself, and only then gave it to his son.
The test showed that the medicine helped him partially recover. The boy is alive, but still unable to roll over and talk.
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