A 15-year-old boy, who was suffering from Progeria and had become the face of a campaign against the rare genetic disorder in the country, has died. Nihal Batla, from Bhiwandi in adjoining Thane district, was fighting the disease that aged him eight times faster than normal.
He was at his grandparents’ house at Karimnagar in Telangana to attend a family wedding. On Monday evening, he felt dehydrated due to the scorching heat and had to be rushed to a private hospital for treatment.
Within a few hours, he passed away, family sources said. His last rites were performed in Karimnagar yesterday.
Nihal and his family had taken up the challenge of raising awareness about the incurable disease, which has an incidence of one in four million, and of finding more such cases for medical intervention in the country.
The boy, who was part of a clinical trial for Lonafarnib drug in Boston to test if the drug could delay ageing, had posted his pictures on Facebook and Twitter to reach out to parents, especially in rural areas. He also featured on a Facebook page called Humans of Bombay where his picture with Aamir Khan drew many likes from users of the social media platform.
Progeria or Hutchinson-Gilford Progeria syndrome, from which Nihal suffered, causes accelerated ageing in children, leading to premature death mostly due to heart attacks.