When I first met Nihal Bitla in 2014, in the outskirts of his house in Mumbai, he looked as odd as the Progeria kids videos I had seen. Big beaky nose, small jaw, wrinkled skin, fragile bones, skinny, very very skinny. For a 13-year-old he barely weighed 12 kilos. But a few hours with him, the awkwardness between us melted. Beneath the bald head and the ageing skin, was a regular teenager, in love with cars and robots.
Today, at the age of 15, Nihal Bitla, the face of Progeria in India passed away at grand parent’s place in Telangana.
There is no known cure or treatment for Progeria.
Progeria made Nihal’s body age eight times faster, so this 15-year-old teenager was trapped in 90-year-old’s body, suffering from severe arthritis and rapidly ageing organs. His death, from complications of the disease, was announced on his Facebook page run by the Boston-based Progeria Research Foundation.
Those who knew Nihal, were bowled over by the riot of enthusiasm he had for Asimo robots, Lamborghinis and Aamir Khan. The average lifespan of a child with Progeria is 13 years. Nihal, living on borrowed time, was fortunate enough to strike off two items from his bucket list - riding a Lamborghini and meeting his childhood love, superstar Aamir Khan.
Also Watch: Remembering Nihal Bitla’s Triumphant Journey
About Progeria
Nihal was one of the 124 children around the world who suffer from this rare genetic disease. One in 4 to 8 millions births, undergo a genetic mutation and develop this nightmarish disease whose hallmarks include, rapid ageing, hair loss, stunted growth, joint deterioration, stiff bones, all leading to premature heart attacks or strokes.
Nihal was a healthy kid at birth, but within a year, his parents knew something is not right. At the age of 4, he was diagnosed with this rare disease. His teeth fell off almost as soon as they appeared. He could only nibble on his favourite food. He loved to run, but his joints ached. He loved going to school, but the after the movie Paa in 2009, where Amitabh Bachchan’s character Auro, had Progeria, his classmates started bullying him, saying cruel things like, ‘you too will die of a heart attack’.
Nihal’s doctors in Mumbai told him he won’t live beyond 13 years but he went on to take part in a pioneer drug trial in Boston with 40 other Progeria kids from across the world. He came back, fitter, healthier and put on two kilos for the first time in years.
The last time I met Nihal’s family about a year ago, his father was very excited with the research going on for the cure of Progeria - he was hopeful. The research is going on, but it was a race against time for Nihal.
The oldest living Progeria kid in the world was Sam Bernes, who passed away at the age of 17.
A Cure Is Already Too Late For Nihal, But Might Offer Hope To the Other Progeria Kids
The Progeria Research Foundation in Boston, founded by parents of the oldest Progeria kid, Sam Bernes, is the only institute in the world which has focussed all its energies in finding a cure for the disease which took away their son too soon.
Scientists have identified the protein which causes Progeria, unlocking it will reveal more about rapid ageing. In 2012, a drug used to treat cancer, lonafarnib, improved vascular stiffness and bone structure in children born with progeria. The drug was touted to be a potential cure, but it didn’t work too well for Nihal.
There are other drugs in the pipeline, but none came soon enough for Nihal. As someone who was bowled away by the infectious enthusiasm of this kid, here’s hoping his short, remarkable life will give a push to research and awareness about this disease.
Also Read: Aamir Khan Meets Nihal Bitla, the Indian Kid Battling Progeria
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