Mumbai-based Priyanka and Mihir Kamat raised Rs 14.92 crore through crowdfunding on ImpactGuru.com to cover the cost of the World's Most Expensive Drug - Zolgensma, as their five-month-old baby Teera is diagnosed with Spinal Muscular Atrophy (SMA) Type 1.
SMA is a rare genetic disease that attacks the baby's nerves and muscles, and as it progresses, makes it extremely difficult for the child to carry out basic activities like sit up, lift their head, swallow milk, and even breathe. SMA is currently the leading genetic cause of infant death worldwide, and it affects 1 in 10,000 babies.
In November 2020, Teera's parents Priyanka and Mihir Kamat put a heartfelt appeal, "Our brand new bundle of joy is fighting for her life. As of now, there are no treatment options available in India for this invisible killer. Our only hope for Teera to have a normal life is to be able to import Zolgensma, a one-time gene replacement therapy, which in her current state could be a potential "cure". Zolgensma is Teera's best shot at quality life, and not just an extended life span.
Other treatment options need recurring lifetime care with a significant annual cost. Commercially Zolgensma is available in the USA for approximately USD USD 2.1 million (INR 16 crores). We are unable to bear this steep cost; hence we request you to please donate with your heart so we can save our Teera's life. We see the hope in her eyes and it gives us all the strength we need to wake up day by day and fight the good fight to save our baby girl."
In 85 days, 87,000+ donors cumulatively contributed Rs 14.92 crore on Teera's ImpactGuru fundraiser. The highest contribution is from an Indian Donor, Rs. 5 lakh. 16,148 Donors across Tier 1, 2 and 3 cities in India contributed Rs. 500 whereas the Average Donation is Rs. 1,750. Around 8,000 Donors contributed up to Rs 100. Teera's ImpactGuru fundraiser page received a total of 1 million+ viewer. Donations came in from 90 countries, the Top 10 Countries for the same are India, The United States of America, Australia, Canada, Singapore, Germany, Malaysia, Qatar, Ireland and Netherlands.
Piyush Jain, Co-founder and CEO, ImpactGuru.com said, "Teera's ImpactGuru campaign has made history in India's medical crowdfunding industry. This is the first fundraiser launched on an Indian crowdfunding platform that has raised the Rs 14.92 crore record amount for a Spinal Muscular Atrophy (SMA) Type 1 patient."
The Kamat's managed to raise the entire USD USD 2.1 million, with remaining funds raised via an international fundraiser.
In a social media post on Teera Fights SMA page on 10th February 2021, the family shared, "Yesterday, The Ministry of Finance, Department of Revenue issued an ad-hoc exemption order on behalf of Teera to direct the department of customs to grant a customs duty and GST waiver on the import of Zolgensma.
Special thank you to PM Narendra Modi for personally intervening in our case and providing the guidance to the concerned departments on the urgency of the matter. Your attention is truly appreciated and our little family is very grateful to you and the country for your help.
Last, but definitely not least. Thank you to more than one lakh donors who made this conversation even possible. Your love towards Teera is the reason we wake up every morning and continue to fight the good fight against this terrible disease."
This story is provided by NewsVoir. will not be responsible in any way for the content of this article. (/NewsVoir)
( With inputs from ANI )
Disclaimer: This post has been auto-published from an agency feed without any modifications to the text and has not been reviewed by an editor