Determined Father Makes Medicine for Dying Son
December 23, 2021
In China, a father named Xu Wei is trying to save his 2 year old son Haoyang who suffers from Menkes syndrome and only has a few months to live. The medication used to help with his condition is not located in China, and unfortunately, the borders are closed in China because of Covid-19. There is no way to get the medicine he needs.
For those of you who don’t know what Menkes syndrome is, it’s a disease that has an effect on copper levels in the body. Some ways to tell if you might have Menkes syndrome is sparse, kinky hair, the failure to gain weight and grow like you’re supposed to, along with deterioration of the nervous system. Some of the symptoms are weak muscle tone, sagging facial features, seizures, and development delay. In Haoyangs case he is unable to talk and is unable to walk which is because of development delay caused by his condition.
Children with Menkes syndrome like Haoyang develop symptoms during infancy, and most likely won’t live past the age of three. Xu was told that the disease was incurable and the medication was not available in China. Xu began to teach himself pharmaceuticals even though he had no experience with medication. Haoyangs condition was seeming to get worse, and only had around a month to live.
Most of the information found online about the medication was in English but that didn’t stop Xu. He used a translation website to understand the information he needed. Once Xu knew what he needed to know, he began to set up a lab in his home. Later he found out that copper histidine could help with his son’s condition. Xu bought all the equipment he needed to create the medication himself. Xu was later able to create the medication by mixing chloride dihydrate with histidine, sodium hydroxide and water. Xu now is giving Haoyang a daily dose of homemade medicine that gives him the copper he’s missing in his body. Haoyang is now doing much better, but he still has a long recovery ahead of him.