Nihal was at his native village to attend a family wedding. He lived with this family in Mumbai suburb of Bhiwandi.
He was among just 100-200 children around the world who suffer from this rare genetic disease which affects just one in 4-8 million births. This made his body age eight times faster, so the 15-year-old teenager was trapped in 90-year-old’s body.
Some of the symptoms of this disease include rapid ageing, hair loss, stunted growth, joint deterioration and stiff bones which lead to premature heart attacks or strokes.
There is no known cure or treatment for Progeria. The oldest living person in the world was Sam Bernes who passed away at the age of 17 in 2014.
Nihal was suffering from severe arthritis, rapidly ageing organs and dehydration. His death, from complications of the disease, was announced on the Facebook page of the Boston-based Progeria Research Foundation.
He was a fan of Asimo robots, Lamborghinis and Aamir Khan. The average lifespan of a child with Progeria is 13 years but Nihal was fortunate enough to strike the items from his bucket list.
In his meeting with Bollywood actor Amir Khan, Nihal had urged him to spread the word about the disease. Amir Khan also announced his death on Twitter:
RIP Nihal Bitla. You were a true inspiration. You’ll be missed. 🙁 pic.twitter.com/hVxwgZXT74
— Aamir Khan FC™ (@The_AKFC) May 3, 2016
Nihal was a healthy kid at birth but was diagnosed with this rare disease at the age of four. His teeth fell off almost as soon as they appeared and he could only nibble on his favourite foods. He also loved to run but his joints ached.
The disease was highlighted in the 2009 film Paa starring Amitbabh Bachman whose character Auro suffers from the disease. After the film Nihal was bullied by his classmates who said that he will die of a heart attack.
His doctors had told him he will not live beyond 13 years. However, he went on to take part in a pioneer drug trial in Boston with 40 other Progeria children from across the world.
He came back to India and was much healthier and even put on two kilos for the first time in years. The research was ongoing but it was a race against time for Nihal but offers hope to other progeria children around the world. Nihal is being remembered in thoughts and prayers.