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Dad Makes His Own Medicine In Desperate Bid To Treat Son’s Fatal Genetic Disease

by : Poppy Bilderbeck on :
Dad Makes Own Medicine For Son - South China Morning Post/YouTubeSouth Morning Post/ YouTube

A father has desperately tried to make his own medicine for his two-year-old son who has a fatal health condition. 

The young boy, named Haoyang, was diagnosed with a genetic and incurable disease called Menkes syndrome.

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An experimental drug has been made to try and help with the disease, however it is not available in China.

Subsequently, Xu Wei took it upon himself to build a home laboratory to try and recreate the drug to make it accessible for his son.

According to the National Center for Advancing Translational Sciences, Menkes disease (MD) is an ‘inherited condition that impacts the way that the body processes copper levels in the body’.

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‘Most children with MD have severe symptoms that lead to death at an early age,’ it states. Symptoms include slow growth, seizures and ‘developmental and intellectual disability’.

There is a pilot drug available to help ease symptoms of the disease, however because of border closures amid the coronavirus pandemic, Xu has not been able to access it.

When I knew that there’s a treatment available for my child’s disease and theoretically it could be tried although it’s far away from us ordinary people, I still  believed that I could try to let my son at least pursue this hope.

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Chinese Father Makes Own Menkes Disease Medicine - South China Morning Post/ YouTubeSouth China Morning Post/ YouTube

Xu, despite not having a medical background and having finished education at secondary school level, has since taught himself how to make the medicine.

In order to try and recreate the treatment, Xu turned his father’s gym into a lab, and simply looked up any terms that he did not understand within the process.

Six weeks into the project, Xu reportedly made his first homemade vial of the medicine, which he tested on rabbits, and himself, before giving it to his son on a daily basis.

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According to Xu, just two weeks into the treatment, his son’s copper levels returned to normal, which he discovered by performing multiple blood tests.

Chinese Father Makes Own Menkes Disease Medicine - South China Morning Post/ YouTubeSouth China Morning Post/ YouTube

Despite his home-made replica of the treatment having not had any independent verification, and the father being noted as operating in an ‘ethical grey area’, Xu has received requests from other parents who have a child with Menkes disease.

According to Rare Diseasesthe majority of those diagnosed with the disease are male, and it occurs in ‘about one in every 35,000 live male births’.

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However, claiming that he is only responsible for his own child, Xu has refused to give his medical creation to any other parent.

Chinese Father Makes Own Menkes Disease Medicine - South China Morning Post/ YouTubeSouth China Morning Post/ YouTube
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As long as Xu only uses the treatment for his son, local authorities have said they do not object to the homemade medicine being created.

Xu noted how the ‘most important thing for [him] right now is to save [his] child’s life’. ‘After that, the next step is to let him recover from his injuries and let him gradually grow into a normal person,’ he said.

Since becoming amateur scientist, Xu now aspires to study molecular biology at university.

‘Even if it [the medicine] fails, I want my son to be on the path of pursuing hope.’

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Topics: News, China, medicine, Now

Credits

South China Morning Post/ Twitter and 1 other
  1. South China Morning Post/ Twitter

    Chinese father makes own medicine in desperate bid to treat son’s fatal genetic disease

  2. Rare Disease Database

    Menkes Disease