Egyptian family raises $2 million to buy world’s most expensive medicine for sick daughter

A crowdfunding campaign in Egypt has successfully raised 40 million Egyptian pounds ($2.1 million) to buy the drug Zolgensma which a young Egyptian child must take before turning two, according to local media.

The prescription drug Zolgensma, sold by Swiss pharmaceutical giant Novartis, is the most expensive in the world, as a spinal injection costs $2.1 million, according to Clinical Trial Arena.

It is used to treat children under the age of two who suffer from spinal muscular atrophy – a genetic condition which has several types and which weakens the muscles leading to problems with movement, Zolgensma explained on its official website.

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It is given as a single infusion into a vein.

According to Shorouk News, the toddler, Ruqayyah, aged one year and 11 months, has spinal muscular atrophy type 2.

Symptoms of type 2 spinal muscular atrophy begin to appear when a child is between six months and 18 months old, according to the Cleveland Clinic.

It affects the lower limbs and while children with it may be able to sit up, they cannot walk. Unlike type 1 muscular atrophy – which kills most children with it before the age of two – most children with type 2 spinal muscular atrophy live to adulthood.

In an interview with Shorouk News on June 6, Mohammed Suleiman, Ruqayyah’s father, said his daughter was diagnosed with spinal muscular atrophy type 2 when she was one year old.

Given the cost of the treatment, he appealed for donations from the public.

Egyptians, including prominent businessmen, actors and athletes, supported the campaign by donating money and took to social media to urge others to donate by bank transfer to an account overseen by the Egyptian Ministry of Social Solidarity.

In a gesture of empathy that was widely welcomed, students at Cairo University’s Faculty of Commerce canceled their graduation party and donated the money allocated for the celebration to Ruqayyah’s family. , according to news site Cairo24.

Ruqayyah’s parents were happy to hear that the amount needed to buy the medicine had been secured.

Videos circulating on social media showed people celebrating outside the family home in Alexandria.

People across Egypt also expressed joy that the campaign was successful, with many taking to social media to congratulate those who donated.

“The love, kindness and solidarity we see in Egypt is truly amazing,” one user wrote on Twitter.

“I never doubted [our people’s] kindness. I am so happy for Ruqayyah. May she recover soon,” wrote another.

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