Crowdfunding miracle: 9cr for baby with rare disease
Times of India | 20 May 2025
12 Nadia: Crowdfunding through social media and donations from celebrities have raised Rs 9 crore for the treatment of 15-month-old Asmika Das from Ranaghat, who suffers from Spinal Muscular Atrophy Type 1 — a rare and debilitating genetic condition that progressively weakens muscles.It took more than a year for the family to raise the amount needed for the child whose limbs have been immobile since birth.Asmika's father Subhankar said her treatment will start at a private hospital in Kolkata by the end of May. Doctors in Kolkata, Chennai and Bengaluru all prescribed an intravenous injection — onasemnogene abeparvovec, sold under the brand name Zolgensma — that costs Rs 16 crore, as the only possible lifeline for her. A distributor agreed to lower the price to Rs 9 crore. "The injection is the most appropriate medicine and should be administered as soon as possible, before the child completes two years of age," said a senior clinical director of a Kolkata hospital."We made a desperate effort to raise funds through social media. Many, including singers Subhamita Banerjee and Rupam Islam, and Rupsha Dasgupta, donated generously," said Subhankar. By Sunday, the family had collected Rs 8.4 crore. The remaining Rs 60 lakh was donated by Matua Matri Sena Charitable Trust. They handed over a cheque to Asmika's parents in the presence of Bangaon MP Shantanu Thakur on Monday.