India’s first reported case of progeria, Nihal Bitla has passed away at the age of 15 years in Telangana. He has been the face of progeria for the nation and is one among the 60 children currently diagnosed with progeria.
Nihal Bitla, from Bhiwandi in adjoining Thane district, was fighting the disease that aged him eight times faster than normal.
Nihal Bitla with his father and mother.
He was at his grandparents’ house at Karimnagar in Telengana 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.
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.
Progeria or Hutchinson-Gilford progeria syndrome is a genetic disorder that accelerates aging eight times more in children. It affects both males and females. The disease is so rare that it affects one in four million births. Children affected with the disorder can have a maximum lifespan of 13 years and mostly die prematurely due to heart attacks.
Nihal was first diagnosed with progeria at the age of 10 years. He was given the only treatment for progeria, lonafarnib drug, that could improve the cardiovascular health and lifespan of these children.
With the help of officials from the Progeria Research Foundation (PRF) in India, Nihal was administered with the drug and slowly his movements improved. But in 2009, he stopped schooling as his health got deteriorated.
After that, Nihal wanted to spread awareness about the disease to the world. He actively participated in many awareness campaigns held by the Progeria Research Foundation. According to the foundation, Progeria affects about 300-350 children globally, of which 60 are in India. The foundation is on a mission to identify these kids and raise funds for them to administer the only drug available for progeria.
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.
Last year, Nihal also met his favorite actor Aamir Khan after his post on his wish went viral on social media. He had requested the actor to spread the word for the Progeria Research Foundation to identify the other victims from India.