Hyderabad: The face of Progeria in India, 15-year-old Nihal Bitla, died on Monday night in Karim Nagar, Telangana. Nihal was at his native village to attend a family wedding.
He lived with this family in Bhiwandi, on the outskirts of Mumbai.
Members of Team Nihal said the teenager was suffering from arthritis for a long time and also faced dehydration just before he was admitted to a hospital on Monday evening.
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.
Progeria is an extremely rare genetic disorder in which ageing symptoms are seen at a very early age. Those living with this rare condition have a low life expectancy and generally do not survive beyond their early teenage years.
According to the Progeria Research Foundation there are 150 to 200 children worldwide living with the degenerative disease who have not yet been diagnosed or identified. Out of these, 60 children are believed to be from India.
‘Find the other 150’ is a project to search for and identify the Progeria patients in India and other countries. The Progeria Research Foundation (PRF) is funding the participation of children from around the world, who will go to Boston Children’s Hospital in Boston, where they will have access to the only known treatment for Progeria.
Nihal had requested Aamir Khan to help spread the word for the Progeria Research Foundation to identify the other victims from India.