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The Hindu
The Hindu
National
Staff Reporter

₹9 crore still needed to save child suffering from rare disease

Six-month-old Imran.

Six-month-old Imran still needs ₹9 crore. A crowdfunding campaign to raise ₹18 crore to save the life of the little child is inching towards fulfilment from the halfway mark.

The child’s parents are fervently seeking the kindness of philanthropists even as Imran is fighting the debilitating spinal muscular atrophy (SMA), a genetic disease affecting the central nervous system, with

ventilator support at the Government Medical College, Kozhikode.

Only a crowdfunding campaign to raise ₹18 crore to save the life of the little child is inching towards fulfilment from the can save Imran. But this rare medicine costs ₹18 crore. Crowdfunding remains the only way out to raise that amount to save a life. Philanthropists showed that

it was no big deal when an 18-month-old boy from Kannur needed that amount to save his life from SMA a couple of weeks ago. The Kannur boy had got ₹18 crore in less than a week.

Imran’s parents, Arif and Mariyumma from Valambur near Perinthalmanna, said they had got ₹9 crore so far and they needed as much amount to import Zolgensma, the life-saving injection manufactured by the Swiss company Novartis.

Arif and Mariyumma have been on a desperate drive knocking on many doors since Imran, their third child, began to show signs of SMA 17 days after his birth. Their second child Liana had succumbed to SMA on the 72nd day after her birth. Their first child Tiana is healthy and four years old.

Imran’s parents’ cry for help was not heard by those in the echelons of power in the State. Finally, they approached the High Court for help. The government responded only when the 14th time the High Court

took up Imran’s case for hearing. As per the court’s order, the government appointed a medical team to report the child’s condition.

Armed with the court’s green signal, local people under the leadership of Manjalamkuzhi Ali, MLA, formed a committee and went about raising money through crowdfunding.

“We are all desperately trying to raise the funds needed for the life saving drug. We still need ₹9 crore. We strongly believe in the collective power of people’s help and we are sure that our society

will not let little Imran die,” said Ummer Arakkal, District Panchayat member who is in the frontline of the committee.

The crowdfunding account for Imran is with the Federal Bank, Mankada.

The account number is 16320100118821, and the IFSC code is FDRLo001632. The Google Pay number is 8075393563.

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