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Humanity shines as Rs 18 cr pooled in for Kerala kid’s treatment within 7 days

A single dose of Zolgensma, a drug labelled as the most expensive in the world manufactured by Novartis Gene Therapies, is considered to be effective against SMA in patients less than two years old. 

By: Express Web Desk | Kochi |
July 5, 2021 10:21:32 pm
spinal muscular dystrophy, SMA drugAfra and Muhammad

He doesn’t know it yet, but perhaps Muhammad’s father would tell him someday about the extraordinary manner in which Rs 18 crores was pooled in within just seven days for his medical treatment.

A week ago, PK Rafeek and Mariyumma, residents of the Mattool panchayat in the Kannur district of Kerala, had come forward with a plea to raise Rs 18 crores for the treatment of their one-and-a-half-year-old son Muhammad who suffers from spinal muscular atrophy (SMA), a rare fatal genetic disorder. The sum, unthinkable for the family to raise on their own, would be enough to import a single dose of Zolgensma, a drug labelled as the most expensive in the world. The drug, manufactured by Novartis Gene Therapies, is considered to be effective against SMA in patients less than two years old.

Soon, a committee was formed under the chairpersonship of the local panchayat president with Muhammad’s family and the local MLA as members, to spread the word about the crowdfunding plan. A bank account was set up to receive the funds and the committee embarked on a massive outreach programme, coordinating with media networks, expatriate outfits, charity workers and social media influencers. The task was daunting, but the family and the committee did not lose sight of the goal. A child’s life was at stake.

On Monday, less than a week later, Muhammad’s family was overwhelmed by the benevolence shown by people across the world. They had received unofficial word from the bank officials that the target of Rs 18 crores had been crossed. The Malayali expatriate community in the Gulf played a key role in the fundraiser.

“Alhamdulilah, alhamdulilah, from the bottom of my heart, I want to thank all the people who helped us and prayed for my son. Once he gets the injection, I will come back to thank you again. I’m so happy that I can’t speak any more,” Rafeek told Asianet News. Rafeek’s daughter Afra, 15, also suffers from SMA and has to use a wheelchair to move about.

Farisha K, president of the Mattool panchayat, told the channel, “I want to tell all the good-hearted people across the world, ‘we have got the help you sent us.’ Our target has been reached so please don’t send any more money into that bank account.”

The family and the committee members also plan to utilise any extra funds for the treatment of Afra.

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