Even as the parents of Baby Teera, who has been fighting Spinal Muscular Atrophy – Type 1 (SMA), and is currently on ventilator support at home, can finally see a glimmer of hope with the Ministry of Finance issuing an ad-hoc order on the child’s behalf to grant an exemption of customs duty and GST waiver worth over R5 crore on the import of Zolgensma – a gene therapy medication used for the disease’s treatment, at least five other kids in the country (all below 2 years of age) continue to suffer from the rare genetic disease without dim hope of recovery. In view of this, Teera’s parents and CureSMA foundation have requested the central government to institutionalise these changes, in the larger interest of the other kids suffering from SMA across India. 

Speaking to mid-day, Teera’s father Mihir Kamat said, “On February 14, Teera will become six months old. The developments over the past couple of days have strengthened our faith in the government and humanity. On February 9, the Ministry of Finance, Department of Revenue, issued an ad-hoc exemption order on behalf of Teera and directed the Customs Department to grant a customs duty and GST waiver on the import of Zolgensma. At the very same time, the Health Commissionerate of Maharashtra issued two certificates, one for the recommendation of customs duty waiver, and the other for GST waiver, which further enforced our case at the state level. We are truly humbled and thankful for the speed at which all these papers were filed and approved.”