A two-year-old boy named Haoyang has Menkes syndrome, a rare genetic disorder in which the body does not absorb copper ions from food and transfer them to cells, which plays a key role in the development of the brain and nervous system in general. The disease is incurable, and children with Menkes syndrome rarely live up to the age of three.
Xu Wei, 30, Haoyang’s father, in an attempt to, if not save, then at least prolong the boy’s life, created a home laboratory in which he produces medicine for his son. The laboratory is located in Xu Wei’s father’s gym, located in a multi-story apartment building in Kunming, Yunnan Province.
The fact is that under normal circumstances, Xu Wei would go abroad with his son, to one of the specialized centers that help relieve the symptoms of children with Menkes syndrome, but now this is impossible, since the borders of the PRC have been closed since the beginning of the pandemic. Therefore, says Xu Wei, he had no choice but to try to make a drug on his own, which partially restores the level of copper in the body. “I didn’t have time to think about whether to do it or not. It just had to be done, ”AFP quoted Xu Wei as saying.
Although the man’s friends and relatives were against, believing that his plans were simply impossible, Xu Wei, who does not have a higher education, began to search for information about the drug on the Internet, while studying chemistry and pharmaceuticals on his own. The man bought equipment for a home laboratory, and as a result, he was able to create the necessary medicine in six weeks. According to him, first he administered the drug to rabbits, then tested it on himself, and only after that he began to give it to his son every day, gradually increasing the dosage. Xu Wei says that after two weeks of treatment, some of Haoyang’s blood counts returned to normal.
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According to the man, the parents of other children with Menkes syndrome have already approached him to make a medicine for them, but he refused, since he can only be responsible for his child. Xu Wei realizes that the drug can only slow down the development of the disease, but believes that he should give his son a chance. In the future, he plans to go to university to study molecular biology and continue to do everything to help Haoyang. “I don’t want him to just hopelessly wait for death. Even if it doesn’t work out, I want my son to have hope, ”says Xu Wei.
Meanwhile, the story of Xu Wei and his son inspired the international biotech company VectorBuilder to begin developing a gene therapy for Menkes syndrome. In the coming months, it is planned to test the therapy on animals.
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