One-year-old Vedika Sourabh Shinde, whose deteriorating health condition due to a genetic disorder had drawn worldwide support, passed away Sunday evening at Deenanath Mangeshkar Hospital in Pune.
Vedika was suffering from spinal muscular atrophy, a rare genetic disease affecting the central nervous system and voluntary muscle movement. She was administered the world’s costliest injection zolgensma intravenously at the hospital last month after Rs 16 crore was raised through various crowdfunding platforms. The news of the 13-month-old girl’s death has gone viral on social media and stunned people who were desperately hoping for a successful turnaround in her health.
“Vedika was her playful self last evening when suddenly she felt a breathing issue. We immediately rushed her to a nearby hospital. After her condition was stabilised at the Bhosari hospital, we took her to Deenanath Mangeshkar Hospital. She was immediately put on ventilator support. Doctors put in all efforts to save her life but unfortunately could not do so. She passed away in the evening,” Vedika’s father Sourabh Shinde told
“After the injection was given to Vedika last month, there was an improvement in her condition. Before the injection was given she was always bed-ridden. But after the injection, she was able to make movements. We also celebrated her birthday last month. The doctors had said that we needed to take extra care for three months after which there will be a major improvement in her condition,” said Shinde, resident of Bhosari area of Pimpri-Chinchwad.
“When Vedika was four months old, she was unable to hold her neck. She used to fall sideways and was not able to hold herself upright,” said the father. When the baby was taken to the doctors, they diagnosed it as SMA which would lead to degeneration of muscles. Doctors then told the family that Zolgensma, said to be the world’s most expensive drug costing around Rs 17 crore, could help her condition.
“Around Rs 16 crore was raised through multiple platforms. MP Amol Kolhe appealed to the government in Lok Sabha to waive import duty on the injection which was available in the US. Actor John Abraham also appealed for donations. The fundraiser infused new hope in us. We don’t know who the donors or well-wishers were. They were from all around the world. They did everything they could to save our child. But destiny had something else in store for her…,” the family said.