As people across the world took to social networking sites on Friday to raise awareness about a rare genetic condition called progeria, 15-year-old Nihal Bitla from Bhiwandi, the only child in Mumbai who is bravely fighting the condition, urged Mumbaikars to do the same.
Progeria is a genetic condition that causes a child’s body to age fast, making survival into adulthood difficult.
As a part of the fourth annual global ‘Hats on for Progeria’ fund raiser, Nihal requested people walking in and out of Chhatrapati Shivaji Terminus railway station, to put on hats, take pictures and upload them on social networking sites so that more people get to know about his condition. The fund raiser was started by the Boston-based Progeria Research Foundation (PRF) four years ago.
“I know that I look very different from other people, but most people don’t know why that is so,” said Nihal. “I want people to take some time out and find out about this condition on the Internet,” he said.
Nihal is currently undergoing treatment at the Boston Children’s Hospital in the United States. “The doctors have put him on a drug called Lonafarnib to extend his lifespan. We will go again in December for a follow-up,” said Shrinavas Bitla, his father.
Although Nihal has stopped going to school, he said he wanted to study robotic science, in the future. “I stopped going to school because I would feel weak and my joints would hurt. However, I spend most of my time either painting or on the Internet,” said Nihal.
Meanwhile, Audrey Gordan, president, Progeria Research Foundation, Boston, said, “Events like ‘Hats on Progeria’ engage people in a unique way. I hope we not only raise money to fund the research, but also spread awareness about progeria through photos and posts on social media. Other children will the condition can also be identified and we can then help them live longer, healthier lives.”