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11-month-old Vedika to be injected with Zolgensma, world’s most expensive drug

A gene replacement therapy (Zolgensma), which would cost INR Rs 16 Crores (USD 2.1mn), had to be imported urgently to save the baby.

SNS | New Delhi |

Vedika Shinde, an 11-month-old baby from Pune, was diagnosed with SMA Type-1, a rare genetic disorder that can take a child’s life before the age of 2. In Vedika’s case, as the diagnosis was done at an early stage, the doctors were optimistic about her recovery.

A gene replacement therapy (Zolgensma), which would cost INR Rs 16 Crores (USD 2.1mn), had to be imported urgently to save the baby. Vedika’s parents narrated their story on the fundraising platform Milaap and requested help from online donors across the world.  The fundraiser which was set up in the month of March received humongous support in the days that followed.

In less than three months, a sum of INR 14.3 Cr was raised from the generosity of donors who supported the campaign on Milaap. The parents were successful in getting a waiver from the government authorities on taxes and import duties. The doctors have already raised a request to a renowned US pharmaceutical company for Zolgensma.

Vedika, who must get the treatment before her first birthday, in June, is now undergoing a few mandatory tests to get the drug custom made for her. The drug is expected to reach by 2nd July and the treatment is expected to happen between the 7th and the 10th of July.

The fundraising campaign on Milaap had earned great attention from the media in the initial phase itself. A sum close to INR 1 Crore was raised in the first week. Nearly 50 support campaigns were started for the same cause on Milaap. Numerous social media influencers like Barkha Singh, Master Chef Shipra Khanna and parenting influencers like Anupriya Kapur and many others helped in amplifying the cause.

Renowned Bollywood actor John Abraham came forward to extend his support by appealing to his fans on his social media handles. A video made by Milaap in which Vedika’s mother Sneha makes an appeal was watched by over 3 lakh people on Facebook. Deeply moved by the overwhelming response, parents have recently posted another video on Milaap’s fundraiser page thanking all the donors for helping them to give Vedika a chance at a better quality of life.