The boy suffers from spinal muscular atrophy.
What unites a popular actor, a cricketer who has played for the Indian team, vegetable vendors and the common man? The answer, in a heartwarming story from Rajasthan, is the goal of saving a 22-month-old boy who had lost nearly all bodily function below the waist and needed to be given an injection worth Rs 17.5 crore to ensure he led a normal life.
Hridayansh Sharma, the son of Rajasthan Police Sub-Inspector Naresh Sharma, is suffering from a rare genetic disorder called spinal muscular atrophy which can be treated with a single dose gene therapy injection called Zolgensma, one of the world's most expensive drugs, which costs approximately Rs 17.5 crore.
In February, when the boy was 20 months old, the Rajasthan Police had launched a crowdfunding campaign for him which had a strict deadline, because the injection can be administered only until a child is 2 years old.
The campaign garnered support from cricketer Deepak Chahar and actor Sonu Sood, who posted appeals on social media, and a drive to collect money from people across Jaipur saw contributions from people of all hues, including fruit sellers, vegetable vendors and shopkeepers. Various NGOs and social organisations also helped gather money for the campaign.
This is the first time that crowdfunding on this scale has taken place in Rajasthan.
In a span of less than three months, Rs 9 crore was collected and Hridayansh was given the injection at the JK Lone Hospital in Jaipur. The remaining amount has to be deposited within a year in three installments.
Spinal muscular atrophy is a genetic disorder in which a person cannot control the movement of muscles due to the loss of nerve cells in the spinal cord and brain stem. This results in muscular weakness and affects the movement of limbs, and even breathing.
Zolgensma (onasemnogene abeparvovec) is manufactured by the Swiss pharma giant Novartis.