According to the Progeria Research Foundation, there are 60 children in India suffering from the condition. Nihal Bitla was the first kid to be identified among those 60 children, and he later on became the face of progeria in India. He passed away peacefully on 2nd May 2016 in Telangana while attending a wedding with his parents.
I had met Nihal and two other kids suffering from the condition at India’s 1st Progeria Kids Meet in September 2015. What struck me most about Nihal was that like every other 14-year-old, he loved Lamborghinis, Asimo Robots, and Aamir Khan. HIs Father’s only wish was to make sure all his dreams and wishes came true. In December 2015, Nihal’s wish of meeting superstar Aamir Khan came true. He also had the chance to sit in a Lamborghini and mingle with Asimo Robots.
While he was no different than a 14-year-old, progeria had taken away most of his childhood from him. At 14, he looked a 60-year-old. A bald head, wrinkled skin, weak and frail frame and a failing health restricted him from playing and hanging out with his friends. Children suffering from Progeria which is also known as the Hutchinson-Gilford Syndrome, have a bald head, a beak like nose and wrinkled skin. And it’s not just the way the look, their health starts deteriorating like an old person. Kidney failure, heart disease and loss of vision, the classic symptoms of old age start manifesting. Many kids with progeria usually pass away from a stroke.
I had the chance to interview Nihal’s Father on how Nihal and their entire family was coping with Nihal’s condition. During the interview, he told me that Nihal would go to school like every other kid but once the movie Paa was released kids in his school started making fun of him. People on the streets would call him Paa and ridicule him. He later dropped out of school. The most moving thing he told me was that they have all sacrificed their lives and live solely for Nihal. They wanted to make sure Nihal’s every wish was fulfilled. Read the full interview about what it is like to raise a kid with progeria in India here.
Image source–Team Nihal