The 15-year-old Nihal Bitla, who was the face of a rare genetic disorder called ‘Progeria’ in India, breathed his last on Monday night in Karimnagar, Telangana. Nihal was at his native village to attend a family wedding.

Progeria or Hutchinson–Gilford Progeria Syndrome (HGPS) is an extremely rare genetic disorder characterized by rapid aging among children leading to premature death mostly due to heart attacks. Those living with Progeria are known to have a short life expectancy and generally do not survive beyond their early teenage years.

Nihal Bitla, who lived with his family in Bhiwandi, on the outskirts of Mumbai was fighting the disease that aged him eight times faster than normal. He has won numerous of admirers for his ability to stay strong and optimistic while fighting a serious battle with this deadly disease.

The boy was regarded the face of research work and awareness programmes conducted across India as well as the ambassador of Finding The Next 60 campaign which was launched in association with Boston-based Progeria Research Foundation (PRF) to locate children suffering from the disorder across the country. Nihal and his family had taken up the challenge of raising awareness about the incurable disease, and of finding more such cases for medical intervention in the country.

Nihad had three wishes in his bucket list which included a trip to Disneyland, seeing the Honda Asimo Robot, and meeting Aamir Khan. Out of which he has got two wishes completed. Nihal had met his icon and Bollywood star Aamir Khan in December 2015 after his Facebook post about his wish to meet his favourite actor went viral. The teenager was also an admirer of Asimo Robots and Lamborghini and was part of special events organized by both the companies. While the former gifted him one of the robots, he later fulfilled his wish of taking a ride in the car.

Nihal was at his grandparents’ house at Karimnagar in Telangana to attend a family wedding. On Monday evening (May 2), 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.

“He fell ill in the evening and was rushed to a local hospital. His father, Shrinivas Bitla, told me he suffered a stroke and passed away around 11.30pm,” said a close family friend. His last rites were performed in Karimnagar yesterday.

Members of Team Nihal, the team of professionals and experts working for the awareness of the disease said that while the death of Nihal has caused immense grief to his admirers, it has also given them courage and will power to fight the condition.