Kerala: Six-month-old infant succumbs to rare disease

This picture has been used for representational purpose

A six-month-old Keralite infant, who was battling Spinal Muscular Atrophy (SMA) and was undergoing treatment since birth, succumbed to the rare genetic disorder in northern Kozhikode district despite a large amount raised for his treatment.

Imran, son of Arif, an autorickshaw driver hailing from Perinthalmanna in Malappuram district, breathed his last on J at the Kozhikode government medical college,
where he had been under treatment since the 17th day of his birth, family sources said. His death came days after over some crores had been raised through crowdfunding by generous people to purchase Zolgensma Onasemnogene injection, one of the most expensive medicines in the world, for his treatment.

One dose of the injection costs Rs 18 crore. Imran's family was struggling to raise the rest of the amount to import the medicine from abroad but was hopeful that
they could make it somehow soon. The Kerala High Court also recently directed to set up a five-member medical board to examine Imran based on the plea
of his father seeking free treatment. The infant's father had moved the high court earlier this month seeking free treatment for his son as the medicine costs around Rs 18 crore and he had no means to raise that kind of money.

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He had approached the court claiming that he cannot ensure his son's treatment without the support of the state government. The state government, in a statement filed in court, however, said that neither the Health Department nor the Kerala Social Security Mission (KSSM) was in a position to extend financial support for bearing the huge cost of the treatment/ medicine required by Arif's son who was on ventilator support.

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