CROWDFUNDING: NRIs make the world’s most expensive drug available for Kerala toddler

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(Our Bureau, July 7) 18-month-old Mohammed — suffering from a rare genetic disorder — is set to get a new lease of life thanks to swift monetary contributions by the Malayalee diaspora. In less than a week, the toddler’s family was able to raise money to purchase Zolgensma, the world’s most expensive drug costing ₹18 crore ($2.13 million). Zolgensma is a US FDA-approved treatment for Spinal Muscular Atrophy (SMA), a rare hereditary disease that can result in paralysis, severe muscle weakness and loss of movement.

Mohammed’s 15-year-old sister Afra is also suffering from the same disease and is paralyzed below the waist due to a delay in diagnosis. Also, Zolgensma needs to be administered before the child turns two.

How the fundraiser happened

Mohammed’s father PK Rafiq, an electrician, had reached out to Farisha Abid, who is president of Mattul (a village in Kerala’s Kannur) gram panchayat. Abid decided to set up a committee, a special bank account and put together a video of Mohammed in a wheelchair, she told Khaleej Times.

 “We focused on teamwork and decided to reach out to people from Kerala living around the globe. We were flooded with calls from all over the world.”

Contributions poured in from the Gulf region, Europe and the US. So much so that now the team has requested donors to stop sending money. The Kerala state government has been petitioned to initiate the procedure of obtaining the medicine from the US

Earlier this year, another child in Mumbai Teera Kamat was administered Zolgensma after funds were raised through an online campaign.

 

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