India: Rs180m raised through crowd funding to buy ‘wonder’ US drug for Kerala kid

Money was raised through crowd funding in one week to treat spinal muscular atrophy

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One-and-a-half-year-old Kerala child Mohammad awaits the wonder drug.
SOURCE Kerala Kaumudi

Thiruvananthapuram: Unbelievably, in a matter of a week’s time, a staggering sum of Rs180 million was raised through crowd funding to treat one-and-a-half-year-old Kerala child Mohammad suffering from a rare disease called spinal muscular atrophy, which causes muscle wasting.

And now the wait begins for the wonder drug, a dose of Zolgensma which has to come from the US and for that the Kerala government will take the lead. A single dose of the drug costs around Rs180 million.

Speaking to the media at the house of Mohammad at Matool in Kannur, local legislator M. Vijin said it’s unbelievable that they have been able to raise this huge sum from well-wishers.

“We first formed a committee and then decided to appeal through the social media and with the help of the media organisations, this campaign gathered momentum. We are still yet to come to terms with the success of raising Rs18 crores in a week,” said Vijin.

“We opened two bank accounts and we have now intimated the banks that no more money needs to be accepted from anyone, as what we wanted is Rs 18 crores and we have achieved that,” added Vijin.

Incidentally, Mohammad’s sister Afrak who is 15 years old also suffers from the same disease. She is elated and thanked all those who came forward to help her young brother.

“I am happy that I can see him running around, while I sit in my wheelchair,” said Afrak.

Rafiq, the father of the two children, could not hide his tears and said they were in no position to even raise Rs 18, they have got Rs 18 crores and they do not know how they can thank the people who came to their support.

“I am leaving for the state capital to meet Chief Minister Pinarayi Vijayan to see that all steps are taken to speed up the import of the drug,” said Vijin.

The house of Rafiq, who works as an AC technician in the Middle East and is presently at home, has become the cynosure of all eyes. Thankfully, his second child 10-year-old Asnila is free of this deadly disease.

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