Egyptian family raises $2 mln to buy world’s most expensive drug for ill daughter

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

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

It’s used to treat children who are less than two years old and who suffer from spinal muscular atrophy – a genetic disease that has several types and that weakens the muscles hence resulting in problems in movement, Zolgensma explained on its official website.

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It is given as a one-time infusion into a vein.

According to Shorouk News, the young child, Ruqayyah, who is one year and 11 months old, suffers from spinal muscular atrophy type 2.

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

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

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

Given how expensive the treatment is, 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 supervised by Egypt’s Ministry of Social Solidarity.

In an empathetic gesture that was widely praised, students at the Faculty of Commerce - Cairo University canceled their graduation party and donated the money allocated for the celebration to Ruqayyah’s family, according to Cairo24 news website.

Ruqayyah’s parents rejoiced upon learning the amount needed to buy the drug has been secured.

Videos circulating on social media showed people celebrating in front of the family’s house in Alexandria.

People across Egypt also voiced their happiness that the campaign has been successful with many taking to social media to commend those who made donations.

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

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

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