At 14, the wrinkles show. His walk is slow. His joints ache every day. And his veins are prominently visible on his bald head. His body might feel as if it is 60 years old, but the thought of growing old at such a young age has not deterred the spirits of Nihal Bitla. The young boy is aggressively trying to locate 60 progeria patients, like him, in India for a clinical trial.
Most of the days, he spends hours pouring over the internet and Youtube in his tiny Bhiwandi Road flat, looking for any lead on children suffering from this disease. Nihal’s efforts are to make these children participate in an ongoing clinical trial in Boston that may show respite in slowing the progression of the incurable disease.
So far, two — Ishaan Katkar and Prachi Sahoo — apart from Nihal have been diagnosed with progeria. With his father’s efforts, and support from local TV channels, the Bitlas recently discovered a three-and-half-year old Aditya Sahu from Raipur suffering from the same disease. They are now helping Aditya’s parents, both teachers, in finding the possible medical options they can avail.
Hutchinson Gilford Progeria Syndrome, or simply progeria, causes rapid aging in children leading to a premature death at an average age of 14 years due to heart attack. One may remember the movie Paa seeing Nihal.
With incidence of one in four million, the Progeria Research Foundation predicts India to have a pool of 60 such children.
Nihal first showed signs of abnormality when he was two months old. His light skin had patches all over the body.
While his parents dismissed it as a skin infection, several doctors guessed it may be a genetic disorder but had no further leads. It was not until five years ago, when he turned 10, that he was correctly diagnosed with progeria.
“It took us 10 years to diagnose him and four years to find out about a clinical trial on progeria. That, despite frequent research on the internet. Such should not be the fate of other parents who live in rural areas of India,” says father Srinivas Bitla, a mobile repair shop owner.
In December 2014, Nihal participated in a clinical trial for the drug Lonafarnib to assess whether his life span could be extended and health condition of progeria patients could be improved. While the trials are still on, the 14-year-old boy, also a good painter, decided to launch a campaign to reach out to such kids.
He also speaks about the disease in events if possible. But roaming in malls without attracting attention is still difficult. “In Boston no body made him feel he was different,” Bitla says.
At some point, Nihal’s family, parents, younger sister and brother, stopped combing or touching their hair in front of him. “Once, he asked, why don’t I have hair like you?,” his father remembers.
In 2010, soon after Paa released on December 4, 2009, Nihal announced he wants to drop out of school. His parents also received calls from relatives, saying the character looks like Nihal. He was teased by other children with “Auro” (name of Amitabh Bachchan’s character in the film). He immersed himself into gadgets, online games and painting since then.
Now, although he does not understand the consequences of the disease, he has accepted that “he is different”. “He no more questions us, “Main aisa kyu hoon” (Why do I look like this?),” his mother Davi says.
Across the world, 250 children are estimated to be suffering from progeria. About 125 have been identified by PRF till 2014. Efforts to locate more are on. In India, his father personally updates Facebook and Twitter with information about progeria. Nihal posts pictures of himself, hoping parents of such children in rural pckets may understand the disease is called progeria.
“He is now 13 kilograms and four feet tall. His body is aging eight times faster than the normal rate. But the drug has helped reduce the patches on his body,” says Dr Parag Tamhankar, divisional head at genetic research center, from National Institute for Research in Reproductive Health (NIRRH), Parel.
Recently, Nihal met Ishaan, Prachi and Aditya in Mumbai— that was the first time he did not feel different from others in India.