2021-12-06 10:56:58  + video 

YUNNAN, Southwest China — When Xu Wei’s son Haoyang, born in 2019, was 8 months old, he was diagnosed with Menkes disease.

Caused by a genetic defect that prevents the body from absorbing copper ions, the condition severely affects a child’s development. There is currently no cure, and the average life expectancy of those afflicted by the disease is only three years.

Menkes disease is extremely rare. In China, people with uncommon illnesses often find the authorities have yet to approve medicines or treatments already available abroad. Despite the government addressing this issue in recent years, Xu came up against the same problem. A doctor told Xu about a compound called “copper histidine” that is effective in the treatment of Menkes but which has not been approved for use in China.

Xu began researching medical papers on his own. He concluded that copper histidine is not difficult to prepare and that the raw materials he would need are affordable. In spite of huge legal risks and doubts from his family and friends that his high school education had sufficiently prepared him for experimenting in pharmaceutics, he decided to make his own medicine.

For 20,000 yuan ($3,140), he asked someone to make copper histidine in a laboratory in Shanghai, and to film the entire process. Back in Yunnan, he quickly transformed his own utility room into a laboratory, purchased the equipment and materials, and concocted this blue liquid in the same way.

To determine whether what he made would be harmful, he bought a small rabbit and gave it an injection. The next day, the rabbit died. Then, he bought two bigger rabbits, who both survived. Soon after, Xu gave himself and his wife a shot. After they experienced no side effects, he decided to administer it to Haoyang.

After two weeks of treatment, his son’s physical condition began to improve.

But copper histidine can only alleviate Menkes — not cure it. Because the compound has difficulty transporting copper ions to the brain, Haoyang’s brain is still unable to develop normally. To deal with this, Xu has begun to make his own elesclomol, which can “escort” copper ions to the brain.

He has also sent his son’s stem cells to be inspected, and wonders whether gene therapy could provide a possible cure.

The bills for his son’s treatment continue to pile up. Since Haoyang became ill, Xu has shelved his e-commerce business and lost his source of revenue. He is currently reliant on savings, credit cards, and loans to maintain his laboratory, while his wife’s job covers most of the household’s expenses.

Xu has ignored the advice of his relatives and friends, who suggested that he could have another child while he is still young. When it comes to his child, he is unwilling to compromise — he won’t give up even if his own wife tries to persuade him. In that case, they would have to make their separate plans, he said. Xu doesn’t want his son to feel like he’s being abandoned.

In recent months, three children in a Menkes support group that Xu is a part of have died one after another, which made him anxious.

One recent day, when he returned home from the hospital, Haoyang’s condition had somewhat improved. Even then, he had diarrhea and could hardly eat anything the entire day, other than half an apple and a small glass of milk. Reliant upon a catheter, and his head tilted slightly to one side, the boy’s body is as soft as that of a newborn baby. Xu held Haoyang in his arms. Pressing his face up against his son’s, Xu took his little hand and said, as if hoping his son would one day say these words, “I’m not ill anymore. I’m ready to go to school.”

A version of this article was originally published by The Paper. It has been translated and edited for brevity and clarity, and published with permission.

Video editors: Ran Yizhen, Lu Yunwen & Dominic Morgan; text editors: Zhi Yu & Kevin Schoenmakers.

(Header image: Xu Wei holds his son, Yunnan province, 2021. Zhao Zhiyuan/The Paper)