Unfortunately, during one of the tests - Electromyography (EMG) which is a diagnostic procedure to assess the health of muscles and the nerve cells that control them (motor neurons), we realized there is some serious issue with Nirvaan’s lower body. At 14th months, Nirvaan got diagnosed with a rare genetic disorder - spinal muscular atrophy (SMA) type 2. Our world was shattered and turned upside down, as this is a life-alternating disorder that takes away the ability to walk, eat or breathe and significantly shortens the lifespan. 

This condition is progressive, meaning that it will continue to get worse over time. But there is a treatment for this condition, a new drug called Zolgensma by Novartis which has shown great promise in helping children with SMA. The only problem is that it is also the most expensive drug in the world, costing a staggering $2.1 million dollars, or nearly ₹17.3 crores rupees. 

For Novartis to approve Zolgensma therapy, a child must not reach 2 years – as this would negatively affect the effectiveness and the safety of the treatment. Nirvaan is currently 15 months old (as of January 2023), thus we have a fight against the clock. This is the reason we have set up this page. We do not have the means to make up anywhere near the required amount ($2.1 million dollars/17.3 crores rupees) in this time frame and need your help.