Kunming: Little Haoyang has just over few months to live. His father struggles to find the medicine that can help little Haoyang fight the rare genetic condition. Sadly, the medicine is not found anywhere in China and closed borders due to the Covid-19 pandemic mean he cannot travel for treatment.
Desperate and racing against time, XU Wei, father of Haoyang, has created a home laboratory to create a remedy for his two year old son, all by himself.
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“I didn’t really have time to think about whether to do it or not. It had to be done,” the 30-year-old told AFP from his DIY lab in a high-rise apartment building in southwestern Kunming.
Haoyang has Menkes Syndrome, a genetic disorder that impacts how copper — which is crucial for brain and nervous system development — is processed in the body.
Sufferers rarely survive beyond the age of three.
But the two-year-old’s father, who has only high school education and ran a small online business before his son became ill, is determined to give him a fighting chance.
All hell bent on him when Xu Wei came to know about his son’s rare condition. Losing no time, Xu Wei, determined to save his son, got onto creating a home-made medicine, while not losing hope to find the medicine online.
“Even though he cannot move or speak, he has a soul and feels emotions,” he said, holding Haoyang in his lap to give him honey mixed in water.
After being told the disease was incurable and the only medication that could help ease symptoms was not available in China, he began researching and teaching himself pharmaceuticals.
“My friends and family were against it. They said it was impossible”, he remembers.
Most online documents on Menkes Syndrome were in English, but undeterred Xu used translation software to understand them, before setting up a home lab in his father’s gym.
On discovering copper histadine could help, he set up the equipment to create it himself, mixing copper chloride dihydrate with histidine, sodium hydroxide and water.
Xu now gives Haoyang a daily dose of homemade medicine, which gives the child some of the copper his body is missing.
The amateur chemist claims that a few of the blood tests returned to normal two weeks after beginning the treatment.
The toddler can’t talk, but he gives a smile of recognition when his father runs a gentle hand over his head.
His wife, who didn’t want to give her name, cares for their five-year-old daughter in another part of the city.
Menkes Syndrome is more prevalent in boys than girls, and it is estimated one in 100,000 babies are born with the disease globally according to organisation Rare Diseases.