Baby with rare disease needs Rs. 16 crore drug. Shashi Tharoor, Samantha Ruth Prabhu, Manju Warrier join fundraiser

Ten-month-old Diya Nandagopal’s best hope for cure from spinal muscular atrophy, a rare and potentially fatal genetic disease, is a drug that costs a whopping Rs. 16 crore. The baby from Bengaluru was diagnosed with the disease last month and her parents are raising funds to get her the drug.

Doctors have said Diya needs Zolgensma, a Rs. 16 crore medicine sold by American-Swiss pharma giant Novartis, which treats spinal muscular atrophy. The drug is administered as an injection.

“She needs to receive this treatment before she turns 2. This is way out of our reach,” her parents wrote in separate Facebook posts, seeking to raise funds.

Congress MP Shashi Tharoor, Telugu actor Samantha Ruth Prabhu, Malayalam actors Manju Warrier, Parvathy Thiruvothu, Rima Kallingal, Tovino Thomas are among prominent voices on social media who have shared the parents’ appeal for help.

“This powerful appeal melted my heart: The lovely baby @everyone4diya deserves a chance at a normal life. If only @Novartis or @NovartisFDN could cut prices for such unfortunate families!” Tharoor tweeted on Wednesday.