Afra Rafeeq, who died this week, had raised millions of rupees to help get a crucial drug for her baby brother.
An Indian teenager who died this week was a social media star whose video appeal had helped raise millions of rupees for her baby brother's treatment.
"We were quite private and concentrated our efforts on getting her the necessary treatment," he says.The family was "devastated", Mr Rafeeq says, "because we knew the pain our daughter had already gone through".SMA is a potentially fatal condition that is likely to occur in one in 6,000-10,000 children. The condition affects the motor neurons - cells in the spinal cord - and gets progressively worse as a child ages.
Since Zolgensma's approval, several Indians have turned to crowdfunding to access the drug, with some succeeding after their appeals went viral. India's health ministry has allowed voluntary crowdfunding for some rare diseases such as SMA. "We tried so many things but it was her video and what she said that struck a chord with people," Mr Ibrahim says.
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