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.
He went to his native to attend a marriage, where he suddenly felt dehydrated due to the scorching heat and was immediately rushed to a nearby hospital. Unfortunately, he died within few hours.
‘Nihal Bitla, India’s first reported case of progeria, a rare disorder that accelerates aging in children, has passed away at the age of 15 years in Telangana.’
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.
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.