NEW DELHI: Around 1.5 lakh people pitched in for little Kanav Jangra. The 18-month-old, suffering from a rare genetic disease called Spinal Muscular Atrophy (SMA) Type 1, needed one dose of an injection to survive beyond two years. The problem was, the injection, Zolgensma, costs Rs 17.5 crore.
Enter the power of the collective. Kanav’s father, Amit Jangra, a tax official, started an online crowdfunding drive that went viral. Delhi government and Bollywood personalities joined in and made appeals. The US drug manufacturer did its bit by agreeing to sell the medicine for Rs 10.5 crore.
‘After injection, my son can sit, move his legs’
The target was reached with the help of politicians, actors, philanthropic organisations and thousands of ordinary folks.
Talking to TOI, an overwhelmed Amit Jangra said, “I just cannot thank all these donors enough for their help. It was impossible for me to raise this huge amount. My son received the dose on July 13 and now after one-and-a-half months his legs have started moving and he is able to sit.”
Kanav was diagnosed with SMA type 1 when he was just seven months old, Jangra added. Babies suffering from this genetic disorder are ventilator-dependent by age two and seldom survive beyond that age. According to doctors, the disease begins in infancy and those inflicted with it cannot sit or walk independently. They can develop feeding difficulties and respiratory complications.
“I request everyone to help parents of those children who are struggling to arrange help for the treatment of their children suffering from SMA,” Amit added.
Chief minister Arvind Kejriwal visited Kanav’s house in Najafgarh on Tuesday to inquire about his health. After a conversation with Kanav’s parents, Kejriwal stated that Kanav needed the injection, which had to be imported from the US. With the efforts of MPs Sanjeev Arora and Sanjay Singh, and support of the public, this injection has been administered to Kanav. “I want to thank all those people who have helped Kanav,” the CM said.
Kejriwal said, “The central government relaxed import duty on the injection, and we extend our gratitude towards them too. Because of this help and injection, Kanav’s condition has improved significantly. Now, his hands are working effectively like a normal kid, his legs are improving. I pray for Kanav’s longer, healthier and happier life.” The CM added that nine cases of the rare disease have been reported across India.
Actors and TV personalities including Sonu Sood, Rajpal Yadav, Farah Khan, Vidya Balan, Shakti Kapoor and Kapil Sharma had appealed for funds for the child’s treatment on social media platforms.