India's first reported progeria patient, 15-year-old Nihal Bitla, died on Monday at a hospital in Karimnagar, Telangana. Progeria is a rare genetic disorder that causes rapid ageing of the body and has been reported among 124 children globally, of which 60 are from India.
Nihal and his family were in Telangana to attend a wedding when he complained of feeling dehydrated. His parents immediately took him to a nearby private hospital, where he died within a few hours, the Indian Express reported.
Nihal not only fought progeria but also helped other children affected by the disease live a normal life. He became the face of India's progeria awareness drive mostly due to his resolve of reaching out to other affected kids. Nihal also used social media platforms such as Facebook and Twitter to do his bit for progeria awareness.
He was also a part of a Boston-based clinical trial for the drug Lonafarnib to test whether it can slow down ageing in children.
The disorder causes accelerated ageing in children, leading to premature deaths mostly due to heart attacks. It is incurable and affects one in every four million children. Children affected by the disease report loss of hair with other ageing symptoms, which begin when they are around 18-24 months old. They die of atherosclerosis (heart disease) at an average age of 14, according to the Progeria Research Foundation (PRF).
PRF was running a page called Team Nihal that highlighted the efforts he had made in helping progeria patients live a normal life.
The team bid their star campaigner goodbye on Tuesday saying Nihal's attitude towards life would serve as an inspiration for years to come.
Team Nihal under the aegis of PRF is running an awareness campaign called #finding 60 in India to locate undetected progeria cases. PRF said nearly 60 children are suffering from the rare genetic disorder in India. But only four have been diagnosed with the disease till now, including Nihal. Nihal's efforts helped detect more cases, including five-year-olds Aditya from Rajasthan and Prachi from Patna, according to the Hindustan Times.
"Nihal, your contagious smile, positive attitude, inspiring chats, optimistic outlook will give us strength for years to come. You have left us behind with heavy hearts for a higher place, Rest in peace our dear friend. Our thoughts and condolences with family and friends, [sic]" Team Nihal 's Facebook update said.