Mumbai-based Priyanka and Mihir Kamat raised Rs 17 crore through crowd funding on ImpactGuru.com to cover the cost of a drug worth Rs 16 crore for their five-month-old daughter.
Their daughter, Teera, was diagnosed with Spinal Muscular Atrophy 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 (Rs 16 crore). 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 roughly 90 days, close to 1 lakh donors cumulatively contributed almost Rs 17 crore on Teera’s ImpactGuru fundraiser. The highest contribution is from an Indian Donor, Rs. 5 lakh.
Teera’s ImpactGuru fundraiser page received a total of 1 million+ viewer. Donations came in from 90 countries. The top 10 countries people donated from are India, the US, Australia, Canada, Singapore, Germany, Malaysia, Qatar, Ireland and Netherlands.
In a social media post, the family shared on February 10:
“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 (/topic/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.”
Medical crowd funding is not new. It is, in fact, one of the most visible forms of crowdfunding in India. Public health infrastructure gaps, limited insurance cover options and prohibitive private healthcare costs have, over the years, expanded the viability of crowd funding as a practical option to cover medical costs.
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