Malappuram (Kerala): A toddler, who was suffering from a serious genetic disorder and required an injection worth Rs 18 crore, died even as citizens gathered Rs 16.5 crore for his treatment. Imran, who was only six months old, showed symptoms for the disorder a few days after his birth. After a series of tests, the doctors confirmed that he was suffering from a rare and serious disorder called Spinal Muscular Atrophy (SMA), which affects the central nervous system, peripheral nervous system and voluntary muscle movement.
He was undergoing treatment at Kozhikode Institute of Maternal & Child Health, Government Medical College, Kozhikode, for the last three months. His father Arif had filed a petition in the Kerala High Court seeking free treatment for the toddler. Arif had informed the court that the only way to save his son was to administer him the medicine worth Rs 18 crore. Following this, the government set up a medical board at the government medical institute as per the court order.
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While the high court directed the medical panel to examine whether Imran could be administered the medicine and sought a report on the same, the court also said his parents could continue with the crowdfunding initiative they had launched for purchasing crucial medicines. However, the only medicine that could ensure his survival was 'Zolgensma' that costs a whopping Rs 18 crore.
Though the crowdfunding received great support, it could not turn effective enough as Imran breathed his last just when his parents needed another Rs 1.5 crore to purchase and import the medicine from the US.
