In Rajasthan, a heartwarming story unfolded as people from all walks of life united to save the life of 22-month-old Hridayansh Sharma, who suffers from spinal muscular atrophy. With a price tag of $2 million, the cure, a gene therapy injection called Zolgensma, was out of reach for the family. In a race against time, the Rajasthan Police launched a crowdfunding campaign to secure the funds before Hridayansh turned 2 years old, the age limit for administering the treatment.

India: Crowdfunding helps toddler get life-saving $2 mn jab

An Indian couple turned to crowdfunding platforms to raise funds for their baby's treatment. The 16-month-old boy needs a drug worth over $2.1 million to beat spinal muscular atrophy. Priyanka Sharma asks, should critical life-saving drugs be so expensive?

Gravitas: Indian couple crowdfunds to save baby

It is often believed that kindness is the greatest virtue of all. A couple based in Mumbai saw it up close when they received $1.4 million in an anonymous donation for the treatment of their only child.

It is often believed that kindness is the greatest virtue of all. A couple based in Mumbai saw it up close when they received $1.4 million in an anonymous donation for the treatment of their only child. Sarang Menon and Adithi had been running from pillar to post to secure funds for the treatment of their child, named Nirvaan, suffering from Spinal Muscular Atrophy (SMA) Type 2, a rare genetic neuromuscular disease. They received the devastating diagnosis from the doctors last month during a routine Electromyography (EMG) test. "At 14th month, 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," the couple informed. The problems were compounded when they came to know that the medicine required for Nirvaan's treatment cost a whopping $2.1 million per dose. A single dose of Zolgensma, manufactured by Novartis Gene Therapies is known as the world's costliest drug, according to UK’s National Health Service (NHS). It takes nearly 20 days to reach India, once the order is placed. Read more: Zolgensma: World's most expensive drug that costs ₹18 crore a dose Crestfallen initially, the couple steadied themselves and took the crowdfunding approach to save their child's life. They started collecting money on two crowdfunding platforms viz. Milaap and ImpactGuru to raise $2.1 million (Rs 17.5 crore). "Ït is heartwarming to know that there are till angels in the world who selflessly come forward to help others in need," they wrote thanking the anonymous angel. × The battle is far from won and the couple understands this. However, the anonymous donation has certainly made their task and the road ahead, a little less bumpy. "Urge you all to continue praying for Nirvaan's fast recovery, as he still has a long road ahead. But for now, let's take a moment to celebrate this wonderful news and the kindness of the donor who has made it possible," the couple wrote on Nirvaan_Fights_SMA Facebook page. The doctors at Mumbai's Hinduja Hospital have initiated discussions regarding the import of medicine from the United States. Meanwhile, little Nirvaan's parents have approached Union Finance Minister Nirmala Sitharaman to seek an exemption in the customs duty and GST that is levied on the medicine in ordinary circumstances. Read more: Indian baby with rare genetic disorder got ₹160 million injection for free from US firm Zolgensma can help babies breathe without a ventilator, sit up on their own, and crawl and walk after a single infusion treatment, as per previous studies. (With inputs from agencies) WATCH WION LIVE HERE:

India: Couple receives anonymous donation of $1.4 million for son's treatment

After winning a fortunate lottery, a newborn from Maharashtra with a rare genetic condition known as Spinal Muscular Atrophy (SMA) was given a life-saving shot worth ₹160 million by a US company for free.

Shivraj Daware's parents claim he is the first Indian SMA sufferer to receive Zolgensma after winning a lottery.

Shivraj received the injection, which experts believe is the most effective medication for SMA sufferers, ahead of his second birthday, according to PTI, citing Shivraj's parents.

Following the initial diagnosis, Shivraj was transferred to Mumbai's Hinduja Hospital.

Dr Brajesh Udani, a neurologist at Hinduja Hospital, informed Vishal Daware that Zolgensma may save his son's life.

Vishal Daware, who runs a photocopy shop in Nashik, said arranging the huge amount was impossible.

Dr&nbsp;Udani, on the other hand, advised that the family enter a lottery being held by a US-based business for conducting clinical studies, through which the family could be able to obtain the injection for free if they are lucky, according to Vishal.

Shivraj was chosen by the corporation in a fortunate draw to receive the injection on December 25, 2020.

Shivraj received the injection at the Hinduja Hospital on January 19, 2021.&nbsp;

"SMA 1 is a genetic disorder. One out of 10,000 children gets affected by the disorder. It slows down the movement of the child and the muscles stop working. Later, it leads to the death of the child," said Dr Ramant Patil who had treated Shivraj earlier.&nbsp;

Unlike Devraj, one-year-old Vedika Shinde, a resident of Pune who was also suffering from SMA Type 1, wasn't lucky. She died on Sunday evening nearly two months after taking the same injection.&nbsp;

(With inputs from agencies)

After winning a fortunate lottery, a newborn from Maharashtra with a rare genetic condition known as Spinal Muscular Atrophy (SMA) was given a life-saving shot worth ₹160 million by a US company for free.

After winning a fortunate lottery, a newborn from Maharashtra with a rare genetic condition known as Spinal Muscular Atrophy (SMA) was given a life-saving shot worth ₹160 million by a US company for free. Shivraj Daware's parents claim he is the first Indian SMA sufferer to receive Zolgensma after winning a lottery. Shivraj received the injection, which experts believe is the most effective medication for SMA sufferers, ahead of his second birthday, according to PTI, citing Shivraj's parents. Following the initial diagnosis, Shivraj was transferred to Mumbai's Hinduja Hospital. Dr Brajesh Udani, a neurologist at Hinduja Hospital, informed Vishal Daware that Zolgensma may save his son's life. Vishal Daware, who runs a photocopy shop in Nashik, said arranging the huge amount was impossible. Dr Udani, on the other hand, advised that the family enter a lottery being held by a US-based business for conducting clinical studies, through which the family could be able to obtain the injection for free if they are lucky, according to Vishal. Shivraj was chosen by the corporation in a fortunate draw to receive the injection on December 25, 2020. Shivraj received the injection at the Hinduja Hospital on January 19, 2021. "SMA 1 is a genetic disorder. One out of 10,000 children gets affected by the disorder. It slows down the movement of the child and the muscles stop working. Later, it leads to the death of the child," said Dr Ramant Patil who had treated Shivraj earlier. Unlike Devraj, one-year-old Vedika Shinde, a resident of Pune who was also suffering from SMA Type 1, wasn't lucky. She died on Sunday evening nearly two months after taking the same injection. (With inputs from agencies)

Indian baby with rare genetic disorder got ₹160 million injection for free from US firm