A six-month-old infant in Kerala, who was battling Spinal Muscular Atrophy (SMA) and 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 July 20, Tuesday night at the Kozhikode government medical college.
SMA affects the central nervous system and causes wasting of muscles used for movement. Imran had been under treatment since he was 17 days old, his family said. His death came days after a large amount of money had been raised through crowdfunding to purchase the Zolgensma Onasemnogene injection, one of the most expensive medicines in the world, for his treatment. One dose of the injection costs Rs 16 crore in India.
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 happen soon. The Kerala High Court also recently directed the state government to set up a five-member medical board to examine Imran’s case, based on a plea by his father. Arif had moved the High Court earlier this month seeking free treatment for his son as the medicine costs around Rs 16 crore and he had no means to raise that much money. 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 and bear the huge cost of the treatment. Recently, Rs 18 crore had been raised through crowdfunding for the treatment of one-and-a-half-year-old Muhammed in Kannur, who was also suffering from the same genetic disease.