Even as he suffered from health problems, his last days were spent in bliss with his entire family as they had gathered to celebrate a wedding in Telangana.
Fighting a rare disease that aged him eight times faster, the country’s first reported case of progeria, Nihal Bitla, passed away at 15.
Nihal had become the face of progeria campaign in India after he, along with his family, took up the challenge of raising awareness about the disease and of finding more such cases for medical intervention in the country.
“We will continue our support to increase awareness on the disease and help other families who have children with this disease,” Srinivas Bitla, Nihal’s father, had said in an interview this January.
The Bitlas are already aiding parents of another progeria-affected child Aditya Sahu, aged three-and-half years.
Nihal was in his grandparents’ city, Karimnagar, to attend a family wedding. On Monday evening, his parents said 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.
Progeria or Hutchinson-Gilford progeria syndrome, from which Nihal suffered, causes accelerated aging in children, leading to premature death mostly due to heart attacks. It is incurable and has an incidence of one in four million. Nihal, while aged 15, had a body that felt like it was beyond 60 years old.
There are 124 other such children who have been identified with progeria globally. The Progeria Research Foundation, however, estimated there are over 250 such children fighting this disease of which 60 are from India.
Nihal, who was part of a clinical trial for Lonafarnib drug in Boston to check whether the drug could delay aging, had posted his pictures on Facebook and Twitter to reach out to parents, specially in rural areas, and help them know what progeria is.