123 Kolkata: A 16-month-old girl received a second chance at life on Wednesday when doctors at Peerless Hospital administered doses of the world's most expensive gene therapy medicine, which travelled approximately 13,000 km from California. Ashmika Das from Ranaghat became the first child in eastern India to receive the Rs 16-crore medicine for Spinal Muscular Atrophy (SMA) Type 1 through crowdfunding.Parents Subhankar and Laksmi Das are hopeful that their only child will lead a quality life. The child was diagnosed with SMA Type 1, a rare and often fatal genetic disorder, when she was only six months old. It is a progressive condition that weakens the muscles and causes respiratory failure."We travelled as far as Vellore and Bangalore to try our luck for a cure, only to come back to Kolkata. Our world collapsed, but we did not give up. The support we received from strangers, communities, and people we've never met restored our faith. Our daughter got a second chance because people cared," said the father, who works as a web designer.The drug, called Zolgensma, is a one-time gene therapy that costs over Rs 16 crore. The drug manufacturer also helped with their Early Access Programme to make the drug available when Rs 9 crore was raised through crowdfunding, on compassionate grounds.Paediatrician Sanjukta De and her team, including Subhransu Sekhar Sarkar, who are working on children with rare diseases, heaved a sigh of relief after the child was administered the gene therapy. The team is assisting a few more cases of SMA 1, like Hridika Das, a toddler, in documentation for crowdfunding and coordinating with the manufacturers so that these children receive the therapy as and when funds are ready."If this gene therapy is given within two years of age, children with this rare disease can lead a quality life. Otherwise, they do not live long and mostly die of choking, respiratory failure, and pneumonia. We already lost a few children while waiting for funds," said De.De and her team currently have four children waiting for funds for the gene therapy. "Caring for children with this rare disease requires compassion and perseverance. Kudos to the paediatrics team who are not giving up despite the challenges. The management will support this effort," said Ravindra Pai, managing director of Peerless Hospital, Kolkata.