Haoyang has Menkes Syndrome, a genetic disorder that impacts how copper is processed in the body. Copper is essential for the development of nervous system.
Haoyang, a two year old kid, has likely just months to live but the only medicine that can help his rare genetic condition is not found anywhere in China and closed borders due to the pandemic. So, his desperate father, Xu Wei, has created a home laboratory to create a remedy for the boy himself.
‘Chinese father races to find the medicine for his son, Haoyang, who has Menkes Syndrome, a genetic disorder that impacts how copper is processed in the body.’
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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.Read More..
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 of this genetic disorder rarely survive beyond the age of three.
"Even though Xu 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.
The only medication that could help ease symptoms was not available in China. So, he began researching and teaching himself pharmaceuticals.
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