Mumbai: To treat 5-month-old daughter, parents crowdfund Rs 16 cr

In times when good news is very hard to come by, five-month-old baby Teera Kamat's story will surely tug at your hearts. Baby Teera Kamat has been suffering from spinal muscular atrophy since birth.

Spinal muscular atrophy is a complete breakdown of nerve cells, which results in zero control over muscle movement. It can be treated with a drug, costing a whopping Rs 16 crore, but is unfortunately not available in India. And little Teera's parents don't have the money to pay for her treatment. The gene therapy drug, Zolgensma, was approved by the US in 2019. It’s a single injection that costs $2.1 million.

With no help in sight, her parents, Priyanka and Mihir Kamat, took to social media to seek some solution for their problem. They put up the post highlight their child's fight with the debilitating ailment. The parents also approached Impact Guru, a crowd-funding website, to help them in spreading their message to the government and people of India. This soon led to a creation of a fundraiser for Teera and appeals to the Union government to waive import duty and GST on medicines.

Khushboo Jain, Co-Founder and COO, ImpactGuru.com said, “It is heartening to witness that donors from 10 countries came forward to crowdfund Rs. 14.92 crore on ImpactGuru in a matter of 100 days for Baby Teera. The Top 10 Countries are India, The United States of America, Australia, Canada, Singapore, Germany, Malaysia, Qatar, Ireland and Netherlands. Majority contributions are from Indian Donors, constituting 84.14% from the raised amount. Highest Donation in INR is 5,00,000 contributed by a Bollywood actor.”

But the journey wasn’t over yet. In their social media appeals, Teera's parents had said that 23 per cent import duty and 12 per cent GST (which adds up to Rs 6 crore) takes the overall cost to Rs 16 crore. On February 9, the Union government waived import duty and GST of Rs 6 crore on the medicines for the five- month-old girl.

Her parents have thanked the donors and the government for waiving off import duty and GST on the medicines.

BJP leader Devendra Fadnavis, on February 1, had written to the Centre requesting a waiver of import duty and GST. "I would like to thank you from bottom of my heart for extremely humanitarian and sensitive approach and quick action for exempting customs duty for importing life saving drug Zolgensma for five-month-old Teera Kamat from Mumbai," Fadnavis said in a letter to the Prime Minister’s Office.

Spinal Muscular Atrophy 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.

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