A few hours after taking the single-dose intravenous injection of Zolgensma, considered the world’s most expensive medical drug, three-year-old Ayaansh told his parents he would like to walk and come home. Rupal and Yogesh Gupta, the boy’s parents for whom it was the most memorable day of their lives, broke down hearing these words.
“Every mother wants to see her child walking and running. I never got to see that,” the 34-year-old mother said recalling those moments from June 9.
Ayaansh has not been a regular boy, after having missed almost all developmental milestones in a child’s growth. It was a few days after his first birthday, on June 4, 2018, that Ayaansh was diagnosed with a rare genetic disease called Spinal Muscular Atrophy(SMA), a life-threatening progressive condition. Not only were treatment options not available in the country, but the drug also cost Rs 16 crore despite the Center’s waiver of import duty and GST running into a few crores. “While leaving the hospital, Rupal and I recalled our situation two years ago when we knew about SMA for the first time. We hope our son can now lead a normal life. That is all that we wanted,” said Yogesh Gupta (35).
After he was administered the dose, Ayansh knew he was soon going to be like other children. “We used to tell him that he was going to be able to walk and run soon, as he was going to get the medicine. So he kept these words in his mind. That is why when we were leaving the hospital he asked if he could walk and come home,” explained Rupal.