15 June 2021- SMA Baby Vedika gets Zolgensma

By: Krisha Gohil

Published On: June 16, 2021

                                

 

When we were blessed with our baby girl, she was the first daughter born in the family in 25 years! Vedika is our little bundle of joy. To think that within months such a bubbly and sweet-tempered child would be battling a disease that has taken the lives of many infants still sends shivers down my spine.

It was on March 5, 2021, that our baby girl was diagnosed with Spinal Muscular Atrophy - a neuromuscular disease that affects the functions of her muscles and nerves, eventually leading to organ failure. SMA was eating away at her body movement, her posture, her breathing. Her lungs had become so weak that we had to resort to nebulization and suction therapy to save her from suffocating on her saliva and mucus. When my little one wailed my wife and I couldn’t bear the sight of our child suffering.

 

The only thing that could bring my once active and jolly child back to me was Zolgensma – the world’s costliest drug. This gene replacement drug was a one-shot chance for my little princess, but the price that we were expected to pay for the medicine sent shivers down my spine -Rs 16 crore!! A middle-class businessman like me could never have imagined raising such an amount all alone, even the rich would quiver upon hearing it.

Whenever my wife and I saw the twinkle in Vedika’s eyes, we couldn’t help but grieve our lack of means to save our only child. But it wasn’t long before we came across the SMA fraternity of Impact Guru, where our little one’s story was received with the generosity of donors like you. Within a span of 76 days, our princess’s story was shared 12k times and caught the eye of 16539 donors across the globe. 

Our happiness knew no bounds. On June 15, 2021, when our child finally got the wonder drug Zolgensma at 11 am. It all happened so quickly, that all these months of struggle felt like a bad dream. The kind of overwhelming support and response people have shown us in these months and especially when they were dealing with the trials of the pandemic, has blown me away. I am in awe of the goodness filled in our world.

I thank Impact Guru for bringing my baby’s story to kind donors across the globe and helping us every step of the way, right from making Vedika’s story go viral, to quick disbursal of crores of Rupees and to finally supporting our endeavour to get us a tax waiver for importing Zolgensma.

Vedika was given the gift of an SMA-free life by all of you. Finally, my daughter can grow up to become just as kind-hearted as you all are and give back to society for all the good it’s done to her. Vedika just doesn’t have us as her family, she also has you- you are a part of her inner circle of loved ones!

- Sourabh Shinde, baby Vedika’s father 

On behalf of the Shinde family, Impact Guru thanks all the saviours who came forth to Vedika’s rescue. We are positive that more kids will be saved from the clutches of SMA with your help. Thank you!  

 

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