Father who made medicine at home to save his son

In 2021, the story of Xu Wei, who lived in China, attracted global attention. After his 30-year-old son Haoyang, living in Kunming, was diagnosed with the rare Menkes syndrome, the father began studying medicine and chemistry independently to save him. This was reported by Euronews.

Menkes syndrome is a hereditary disease that disrupts the body's process of absorbing and using copper. The disease is more common in boys, and in severe cases, patients may not live past the age of three. There is no effective cure for the disease, but copper preparations can slow its progression in some cases.

Doctors told Xu Wei that the copper histidinate preparation that could help his son was not available in China. Due to the COVID-19 pandemic, the possibility of traveling abroad for treatment was also limited. After that, the father began searching for ways to prepare the medicine by studying scientific and medical materials on the internet, mainly in English, using translation software.

Xu Wei set up a small laboratory in his father's gym and purchased the necessary equipment. After about six weeks of research and experiments, he managed to prepare the first sample of copper histidinate. He tested the preparation on rabbits first, then on himself. Only then did he start giving it to his son.

According to Xu Wei, about two weeks after the treatment began, some of his son's blood tests improved. However, copper histidinate is not a complete cure for the disease, but a preparation that helps slow its progression and alleviate some symptoms.

The father's determination later attracted the attention of experts in the field of biotechnology. VectorBuilder company and Lantu researchers began working together on gene therapy for Menkes syndrome. Later, Haoyang participated in an experimental gene therapy program in this field.

Xu Wei's story showed how important parental determination can be in finding treatments for patients with rare diseases. His goal was not only to help his own child but also to contribute to finding effective treatments for other children struggling with Menkes syndrome.