Thursday 22 July 2021 10:20 AM UTC
MALAPPURAM July 22: A 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’s plight was reported by the media after Malayalees joined hands to collect Rs 18 crore.
Imran, son of Arif, an autorickshaw driver hailing from Perinthalmanna in Malappuram district, breathed his on Tuesday 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.
The only drug that works against this medical condition is ZOLGENSMA, is highly expensive and costs around Rs 16 crore and has to be imported, for which additional import duty and taxes have to be paid, making it cost around Rs 18 crore.
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.
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.
The government informed the court that 102 people in the state suffer from the rare disease and 42 of them have received treatment with support from medical firms under the corporate social responsibility programme.
The government, in a statement filed in court, has 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 has been admitted in the Kozhikode Medical College Hospital and is on ventilator support.
A crowdfunding initiative led by the local MLA had raised over 16 crore for Imran’s treatment and was hopeful that the remaining amount could be collected soon.
But before that could happen, little Imran left the world of pains.
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