In Delhi, an 18-month-old boy named Kanav is suffering from a rare genetic disorder Spinal Muscular Atrophy (SMA) that affects the nerve cells which control voluntary muscles.Delhi CM Arvind Kejriwal meets 1.5-year-old boy suffering from genetic disorderRecently, Kanav was administered Zolgensma, one of the most expensive drugs in the world from the US, reportedly costing an eye-popping amount of ₹17.5 crore. The boy, who lives in Delgu had been battling the disorder since his birth, which left his legs non-functional.On Tuesday, Delhi Chief Minister Arvind Kejriwal visited Kanavs family. “If the disease wasnt treated within 24 months, his life could have been in danger,” he said, after a conversation with the babys parents.About ZolgensmaZolgensma is a lifesaving medicine for this rare disease, however, it costs a huge amount that was not possible for the family to arrange. Still, it was brought from the US and the money for its purchase was arranged through crowdfunding.Notably, SMA is caused by a lack of the SMN-1 gene in the body. The disorder had left the 18-month-old toddler with paralysed legs. Gradually, the morbidity started impacting the upper parts of his body, making it ardent for him to sit.After several tests, Kanavs parents got to know that their son was suffering from a rare genetic disorder which could jeopardise his life, starting with lung failure.First case in Delhi: CM Kejriwal“In the entire country, there have only been nine such cases and this is the first case in Delhi,” the chief minister said.“His hand movements started only after the medicine was administered to him. Earlier, there was no movement at all,” Kanavs mother Garima told PTI on Tuesday with Kanav in her arms, who kept grabbing the mic. “We ran from pillar to post for his treatment. Only we know what we went through,” she said.Meanwhile, Kejriwal also thanked the Centre for relaxing import duty on Zolgensma.
