Unable to find the medicine his two-year-old son desperately needs in China or even import it from abroad, a loving father set up his own laboratory and synthesized the drug himself.
Two-year-old Haoyang suffers from Menkes Syndrome, an ultra-rare genetic disorder that affects how copper is processed and absorbed in the body. The boy cannot move or speak and experts claim he only has months left to live but his father refuses to give up on him. As long as he draws breath, he is determined to do everything he can for his son, even if it means teaching himself chemistry and producing the medicine Chinese authorities have been unable to provide. Xu Wei, a desperate father from southwestern Kunming, has touched millions with his determination and unwavering devotion to his ailing son.
Photo: @NCI/Unsplash
Sufferers of Menkes Syndrome rarely live past age three, but despite experts’ grim prognosis, Xu Wei has been doing the impossible to give his son a fighting chance. Upon hearing that the only medicine that could slow down’s Haoyang’s condition was not available in China, and that the Covid-19 pandemic had made it almost impossible to seek help abroad, the 30-year-old father decided to take matters into his own hands.
If he couldn’t find it China, have it imported, or take Haoyang to another country for treatment, he would make the medicine himself. Despite lacking any kind of chemistry training or experience, Xu Wei managed to turn his father’s lab into a working laboratory, and, after finding a bunch of studies and documents on Menkes Syndrome online, he taught himself to produce copper histidine.
“My friends and family were against it. They said it was impossible,” Xu recalled. “I didn’t really have time to think about whether to do it or not. It had to be done. Even though he cannot move or speak, he has a soul and feels emotions.”
Made by mixing copper chloride dihydrate with histidine, sodium hydroxide, and water, copper histidine provided some of the copper Haoyang’s body is missing, and which is crucial for the development of his brain and nervous system.
Xu Wei produced the first vial of copper histidine about six months after starting his ambitious project. He first tested it on rabbits then injected himself with it as well. The rabbits appeared to be fine, and so was he, so he decided to give the medicine to Haoyang as well. His blood tests returned to normal two weeks after beginning the treatment, and even though he has acknowledged that he can only slow down his son’s disease at this point, he is determined to give him the best fighting chance.
As an ultra-rare condition that only affects about 1 in 100,000 children, Menkes Syndrome hasn’t really been on pharma companies’ radar. Medicine to treat it holds very little value to the, as the number of sufferers is small. Still, Xu Wei’s story managed to impress VectorBuilder, an international biotech lab, which is now launching gene therapy research into Menkes, with clinical trials and tests on animals planned for the next few months.
Ever since his story went viral, Xu has been approached by families in China begging him to treat their loved ones as well, but he has politely refused, as the law only allows him to treat his own son. As long he doesn’t use his medicine on anyone else but his son, authorities won’t intervene.
Working in his DIY lab full-time, Xu Wei can no longer work and relies solely on his parents for financial assistance. His wife lives with their daughter in another apartment in Kunming.
