Kerala

Kerala family crowdfunds Rs 18 crore in one week to treat child with rare disease

One-and-a-half-year-old Muhammed has spinal muscular atrophy, which is treated with a drug that costs Rs 18 crore for a single dose.

Written by : IANS

In just one week’s time, a staggering sum of Rs 18 crore was raised through crowdfunding for the treatment of one-and-a-half-year-old Muhammed from Kerala, who suffers from a rare disease called spinal muscular atrophy (SMA). The disease affects the central nervous system and causes the wasting of muscles used for movement. The money will be used to procure the single-dose drug Zolgensma, produced by Novartis, which has to be imported from the US. One dose of the drug costs Rs 18 crore.

Speaking to the media at Muhammed’s house at Matool in Kannur, local legislator M Vijin said that it is “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 social media, and with the help of media organisations, this campaign gathered momentum. We are still yet to come to terms with the success of raising Rs 18 crores in a week," he said.

"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," Vijin added. Incidentally, Muhammed'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 brother.

"I am happy that I can see him running around, while I sit in my wheelchair," Afrak said. Rafiq, the father of the two children, expressed his gratitude to all those who contributed to help Muhammed.

"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. Rafiq works in the Middle East as an AC technician. Their home in Kerala has now become the centre of attention, after the successful crowdfunding campaign.

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