VADODARA: Triplets being born are rare, but for a couple in Vadodara two of their three such children were detected with a rare condition that now needs crores for treatment. The two babies are suffering from Spinal Muscular Atrophy (SMA) and the only treatment would cost Rs 32 crore in all.
Sahil Kiri and his wife Reshma were blessed with a daughter Prisha and two sons Pratham and Parthiv on July 15 last year. In February this year, however, tragedy struck them when the couple came to know that Prisha was suffering from SMA Type 1. The genetic condition leads to muscles becoming weak and can eventually cause death.
Kiri said that Prisha was diagnosed with SMA on February 7. “We got Pratham and Parthiv tests done after this. While Parthiv did not have the disease, Pratham was detected with it on February 15,” said Kiri.
The treatment for the disease is gene replacement therapy with the intravenous administration of Zolgensma. While the injections have to be imported, the cost of treatment is a major concern. The treatment for each child costs Rs 16 crore if the customs duty is waived. With duty this could go as high as Rs 20 crore, Kiri said. The injection is believed to be amongst the costliest globally.
Kiri started efforts to collect funds for the treatment on February 26 through a crowdfunding platform. People have also been collecting small amounts on streets, crossroads and wherever they can. “In all, we have managed to collect around Rs 92 lakh which is far from the amount we need,” said Kiri.
Kiri, who works with a private bank, said Prisha already needs oxygen support. He has approached the state and central governments and mailed also sent mails to the Prime Minister and the Chief Minister.
