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.
Haoyang, two, has Menkes Syndrome, an extremely rare genetic condition that affects how copper is digested and absorbed in the body. The boy is unable to move or speak, and experts believe he has only a few months to live, but his father refuses to give up on him. He is determined to do everything he can for his son as long as he can, even if it means teaching himself chemistry and creating the medicine that Chinese authorities have been unwilling to deliver. With his determination and steadfast commitment to his ailing son, Xu Wei, a desperate parent from southwestern Kunming, has touched millions.
Menkes Syndrome patients seldom live past the age of three, but despite the physicians’ dismal prognosis, Xu Wei has been doing everything he can to give his son a fighting shot. When he learned that the only treatment that could assist Haoyang’s illness was not accessible in China, and that the Covid-19 outbreak had made seeking aid overseas nearly difficult, the 30-year-old father decided to take matters into his own hands.
“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.”
Copper histidine, which is made by combining copper chloride dihydrate with histidine, sodium hydroxide, and water, provides some of the copper Haoyang’s body lacks and is essential for the development of his brain and nervous system.
Six months after beginning his ambitious research, Xu Wei created the first vial of copper histidine. He first tried it on animals before injecting himself with it. He decided to give the medicine to Haoyang as well because the rabbits appeared to be fine. His blood tests returned to normal two weeks after starting the medication, and while he admits that he can only slow the progression of his son’s sickness at this time, he is determined to give him the best fighting chance possible.
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.