A Father's Undying Will To Find Medicine For His Dying Child

Hopeless battle.

Xu, who has only high school education and a small online entrepreneur, has scoured

the internet to seek information and possible cure to his son’s disease. He maximized

all the apps he knew in order to translate pages into Chinese and learned

pharmaceuticals by himself.  In one of his readings, he came across copper histadine

can help in his baby’s battle against his disease. But since the lockdowns and travel

restrictions imposed in connection with the  spread  of the covid 19 virus made it

severely tough for the 30-year old Xu Wei from southwestern Kunming to travel far

and wide to seek medications that can cure his two-year old baby born with the very

rare Menkes Syndrome disease.

Menkes Syndrome is a very rare genetic disorder due to the poorly distributed but very vital copper protein needed for the function and development of the bones, skin, hair, blood vessels and the nervous system.  Infants diagnosed with Menkes Syndrome are said not to live past three-years old.  It's a very rare disease affecting one in 100,000 to 250,000 of babies.  Clinical tests and trials of injecting copper supplements have only resulted in a very insignificant effect.  Pharmaceutical companies seem to have shown little interest manufacturing medications for Menkes Syndrome due its low commercial value and insignificant number of users.

Hope against all hope.

Realizing that the odds of securing the medicine was quite very low, he decided

to make the medicine himself, turning his father’s gym into a makeshift laboratory

to concoct and make medicines himself for his dying son.  But many among his

friends and family were against his ideas.

And when the concoction was ready, he tested and injected it with rabbits and

then to himself.  When he saw no adverse reactions, he then tried it gradually on

his baby. Increasing the dosage by and by. Xu knew that what he made was not

a cure but could only slow the progression of the disease at least.

The aftermath of hope.

Xu’s diligence and perseverance  have somewhat awakened significant people.

He was contacted by other parents with children of the same disease to share

his concocted medicine.  He told them that his concoction was for own home use

only and turned them down saying he can only be responsible for his own.  The

chief scientist of a biotech lab was also inspired by Xu and launches gene therapy

research for Menkes Syndrome with him.

In the near future, Xu likewise plans to take up molecular biology at a university

soon as aid for his will in protecting and saving his son. He said that he just want

hope instead of just desperately awaiting the death of his son.

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