Fifteen-year-old Nihal Shrinivas Bitla who suffered from a rare genetic disorder progeria, succumbed to his condition at a hospital in Karimnagar in Telangana on Tuesday.
Nihal was instrumental in creating awareness about the disorder in India, and was the face of the Progeria Research Foundation’s campaign to detect undiagnosed children living in India.
Hutchinson–Gilford progeria syndrome, commonly known as progeria, is the condition where a child ages eight times faster than normal and hence has a much shorter life span than children their age. Such children usually die from a heart attack or stroke.
Nihal and his family, who live in Bhiwandi, were in Telangana to attend a wedding. As he was severely dehydrated, the teen was admitted to a local hospital. Doctors suspect that Nihal’s hardened arteries, a condition common in the elderly that restricts blood flow, contributed to his sudden death.
Dr Parag Tamhankar from National Institute for Research in Reproductive Health, who had diagnosed Nihal when he was 10, said the boy appeared like a 60-year-old despite his age. Nihal was brought to him with complaints of stiffness of bones and wrinkles all over his face.
In 2014, Nihal along with three-year-old Ishan, another child with Progeria from Satara, went to Boston, US, to undergo a clinical trial of a cancer drug meant to slow accelerated ageing.
A campaign called #finding 60 in India is working towards finding undetected cases in India. The campaign is spearheaded by Team Nihal, under the aegis of Progeria Research Foundation that estimates at least 60 children in India suffer from progeria. So far only four, including Nihal, have been diagnosed. It was Nihal’s efforts that were instrumental in finding two more cases: five-year-olds Aditya from Rajasthan and Prachi from Patna.
In 2009, only 56 children globally were diagnosed with progeria, according to the foundation. With their efforts, now 125 children have been found.
Despite his efforts to raise awareness, Nihal had to deal with stigma from the disease and stopped going to school. He liked painting and had the opportunity to personally gift one of his works to actor Aamir Khan. The Bollywood actor met Nihal after he found out the boy wanted to meet him.
Dr Tamhankar had earlier said that children with progeria generally appear normal at birth. “During the first year, signs and symptoms, such as slow growth and hair loss, begin to appear. There is no complete cure for this disease but with the new drug treatment, the life expectancy of these children can get extended and quality of life may improve,” he told Hindustan Times.