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What do you do when your child’s life is dependent on a Rs 16 crore drug? © Provided by The Times of India Ayaansh was about eight months old when his family realised something was wrong he could not crawl or sit up, struggled to have milk or food, and had no neck control. The paediatrician would say that it could be a milestone delay. “But, when he did not achieve any milestone at nine months, we visited a neurologist and were shocked to hear that he had Spinal Muscular Atrophy (SMA),” says Yogesh Gupta, Ayaansh’s father. This was in June 2019. Two years on, the family’s hopes are pinned on a wonder drug - Zolgensma. However, the medicine costs $2.125m (around Rs 16 crore) are prohibitive. So far, the family has been able to raise Rs 1.4 crore and are requesting NGOs, philanthropists and the government to help.

United statesUnited arab emiratesParveen nishaAshok guptaYogesh guptaPrasanna shirolRashtriya arogya nidhiMohammed basilMuhammed asheelMohamad rafiqOrganisation of rare diseases indiaUnion ministry of health family welfareNational policy on rare diseasesIndian council of medical researchRare diseases centreSpinal muscular atrophy