What unites a popular actor, a national cricketer, vegetable vendors and common folk?
The answer, in a heartwarming story from Rajasthan, is the goal of saving a 22-month-old boy who had lost nearly all bodily functions below the waist and needed to be given an injection worth Rs17.5 crore ($2.8 million) to lead 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 (SMA) which can be treated with a single dose gene therapy injection called Zolgensma, one of the world’s most expensive drugs.
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 is manufactured by the Swiss pharma giant Novartis.
Hridayansh’s parents told the Free Press Journal that the boy was diagnosed with the disease six months after birth.
Hridayansh was born by cesarean delivery without complications. But, after six months, when the family members tried to make him stand, he was unable to do so.
Last February, when the boy was 20 months old, the Rajasthan Police launched a crowdfunding campaign for him that had a strict deadline – because the injection can be administered only when a child is two years old.
The campaign garnered support from cricketer Deepak Chahar and actor Sonu Sood, who posted appeals on social media.
The drive to collect money across Jaipur saw contributions from people from all walks of life, including fruit sellers, vegetable vendors and shopkeepers.
Various NGOs and social organisations also assisted the campaign.
This is the first time that crowdfunding on this scale took place in Rajasthan.
Within three months, Rs9 crore was collected and Hridayansh was given the injection at the JK Lone Hospital in Jaipur on Tuesday.
Dr Priyanshu Mathur, in-charge of the Rare Disease Unit at the hospital, and his team administered the injection, which was imported from the United States.
The remaining amount has to be deposited within a year in three installments.
Dr Mathur said: “Hridayansh’s parents approached doctors when he was not able to stand, though he reached the age when normally a child can do that. In the test, it was found that his leg muscles didn’t work properly.
“Weak nerve cells near the spinal cord cause SMA. The condition will become more severe with age. This disease will also affect respiratory muscles. Consequently, the kid will suffer from pneumonia repeatedly.”
Like Hridayansh, many parents in India cannot afford to buy Zolgensma and other SMA drugs.
While there is no official data on the number of Indians with the disease, studies show that SMA affects nearly one in 10,000 newborn babies in the country.
According to a study, one in 38 Indians are carriers of the faulty gene that causes SMA, compared with one in 50 people in the West.
Indo-Asian News Service
