“They have never taken the issue seriously: Why doesn’t anyone in the world take up the task? Even pharmaceutical companies? First, it’s a rare disease. Second, it’s also not profitable to do so. I’d say I’m very stubborn. I will firmly stick to whatever I want to do.”
Children with Menkes syndrome will not develop normally, and they will also have degenerative neurosis. They will continue to get infected until one of their organs fails first and succumb to death. Photo: The Paper
Xu Wei, a father with only high school education, has never expected this scenario: burying himself in a laboratory, familiarising himself with complex medical equipment and solving chemical formulas. He did everything for his son Haoyang who contracted Menkes disease.
A bolt from the blue
From Kunming, Yunnan province in the southwest of China, Xu Wei had been operating an online store. With a son and daughter, he and his wife once lived a happy life. Yet happy story came to an end when Haoyang turned six months old.
Xu discovered Haoyang’s developmental delay compared with other infants his age. Haoyang was initially diagnosed with developmental delay, but the doctor suggested a further gene testing. Unfortunately, Haoyang was confirmed to have Menkes syndrome, which was the first case in Yunnan province. The average life expectancy for Menkes patients is three years old.
“I don’t even know copper is an essential mineral to we humans until he got sick. He can’t absorb copper ions from food which caused a series of complications.”
Xu added, “Haoyao’s body at that time was too weak to sit, crawl and look up.”
“Right after his diagnosis, I had no appetite at all and lay on my bed all day long. My tears kept streaming down whenever thinking of his illness. I also feared others will ask about his health situation because that will remind me of the misfortune again and again.” Xu’s wife recalled the past.
The Menkes syndrome has made the 6-month-old Haoyang unable to sit up or crawl. Photo:The Paper
A father strives on
After the initial diagnosis, Xu still took a chance on better healthcare systems elsewhere that Haoyang might be cured. Then he travelled around the country with Haoyang to find a specialist for treatment.
Luckily, Xu managed to contact a specialist in Menkes syndrome in Beijing. Unluckily, there was little the doctor could do.
“According to the doctor, copper histidine is used for treatment abroad, but it is not available in China.” Xu Wei closed his mouth, concealing his resignation.
Besides consulting doctors, Xu has also exerted tremendous effort in investigating the disease in his own way.
“I collect different research papers and use translation software to read English ones. I know nothing about academic jargon, so I need to check and verify them one by one.”
Embark on the journey
“As copper histidine is unavailable in China, the COVID-19 has also blocked my way to get it abroad. Turning to pharmaceutical companies will take too long and inevitably cost too much. Thus, desperate Xu has eventually conceived the idea of making medicine by himself.
“I think all parents will try their best to save their kids if they are in trouble. But we just do it in different ways.”
Since the Menkes syndrome is a rare disease in China, Xu needs to read many English papers to gain understanding. The amateur chemist depends on translation software for reading. Photo: The Paper
However, the bold idea was not greeted with cheers within the family, but only gained strong disapproval. Xu’s wife even wanted to file for divorce. They all believed Xu “was too childish and naive because the problem was not even solved by scientists and experts.”
Xu was still undeterred and ignored the suggestion from his parents to have another kid while still young. He argued, “Am I going to abandon my new kid if he still gets the disease? If so, everything can be given up at the end.”
Despite limited knowledge, Xu has tried his best to consult as many academic papers as possible before setting the wheels in motion. Accordingly, he procured all the medical equipment and set up the home laboratory step by step to throw a lifeline to his ailing son.
After the first successful attempt, Xu’s father said, “He first experimented the medicine with rabbits. After that, he tried it himself. Only after both rabbits and him are fine that he dares to try it on his son."
Embrace failure
Xu’s decision to make medicine himself is adventurous. Since Haoyang got sick, Xu stopped doing his business and completely lived on his savings. He almost went all in for the medicine.
Outsiders tend to compare Xu’s journey to a venture into the unknown, but Xu doesn’t see it that way.
Xu Wei turned his utility room into a laboratory. Photo: The Paper
“If it fails, we could raise Haoyang’s life to a higher level. We can inspire more families suffering from rare diseases through our story. Our experience will pave the way for further studies in treating Menkes.”
Xu is looking forward to dedicating his future to gene editing. So, he is now getting prepared to resume his studies by taking the college entrance exam. He wishes to study molecular biology in the future, hoping to find better treatments for Menkes.
“I’ll do my level best and leave the rest to God’s will.”
Reference:
1. https://www.hk01.com/大國小事/684071/雲南童患遺傳病-父親自製藥救子-很多患兒在等死-望幫助更多人
2. https://tw.news.yahoo.com/罹患罕見疾病無藥可治-親父化身藥神設置實驗室手工配藥救兒-030243883.html
3. https://www.abc.net.au/news/2021-11-29/dad-manufactures-medicine-for-sick-son-china/100645022
4. https://www.straitstimes.com/asia/east-asia/the-chinese-dad-making-medicine-to-treat-his-dying-son
Read more:
1. https://medlineplus.gov/genetics/condition/menkes-syndrome/
4. Want to know how Menkes disease patient spend a day?
Comments