World’s costliest injection couldn’t save 1-year-old, loses battle to rare genetic disease

One-year-old Vedika Sourabh Shinde passed away on Sunday evening at Deenanath Mangeshkar Hospital in Pune. The girl had a genetic disorder that had gained worldwide support. Her health had recently been deteriorating, due to which she passed away at such an early age. 

World’s costliest injection not enough to save Vedika Sourabh Shinde 

Vedika Sourabh Shinde had Spinal Muscular Atrophy type 1. It is a rare genetic disease that affects the central nervous system and voluntary muscle movement. SMA did not affect her cognitive condition. The doctors had administered her Zolgensma, the world’s costliest injection. The intravenously injected Zolgensma cost Rs. 16 crores, which had been crowdfunded for the girl, via multiple platforms.

The injection had improved her condition, and she was not bed-ridden post the injection. As per reports, when the girl was four months old, she was unable to hold her neck and could not hold herself upright. This led to her being diagnosed with spinal muscular atrophy, which would lead to degeneration of muscles. The doctors had then told the family that Zolgensma could help her condition. Reportedly, MP Amol Kolhe had appealed to the government in Lok Sabha to waive import duty on the injection, which was available in the United States. John Abraham had also appealed for donations for the girl. Donors had sent in money from all over the world. The drug can only be administered to children below the age of two years.

Vedika Sourabh Shinde's rapid health deterioration in Pune hospital

As per reports, Vedika was alright in the evening but had to be rushed to the hospital after facing a breathing issue. Her condition was stabilised at the Bhosari hospital, after which she was taken to Deenanath Mangeshkar Hospital. Vedika was put on ventilator support immediately, but she could not be saved. The news of her demise has also gone viral on social media. She was the first girl child in the family in 25 years. Vedika and her family resided in the Pimpri Chinchwad area of Pune in Maharashtra.

(IMAGE: @VEDIKA FIGHTS SMA - FACEBOOK)