The prominent face of progeria in India, Nihal Bitla, has passed away at a hospital in Telangana at the age of 15. The young boy from Bhiwandi near Thane had led an awareness campaign about the rare genetic disorder and earned respect the world over. The fifteen year old boy was rushed to a hospital on Tuesday, due to dehydration in the extreme heat at a wedding at Karimnagar in Telangana where he died.
Nihal suffered from Progeria – a disease that causes the human body to age eight times faster than normal. Nihal was born a healthy child but began showing symptoms of the disease at the age of 4. According to a study, one in 4 to 8 million children undergoes genetic mutation and Nihal’s case was one of these unique cases.
Nihal was part of a clinical trial for Lonafarnib drug in Boston to test if the drug could delay ageing for Progeria victims. As the ambassador of ‘Finding the Next 60’ campaign launched in association with Boston based Progeria Research Foundation (PRF), he tried to locate 60 other Indian progeria victims. He and his family extensively campaigned to increase awareness about this genetic disorder, especially in rural areas of India. Nihal became a popular figure for his contribution in the campaigns, and received support from stars like Aamir Khan who visited him at his residence.
Youth and children suffering from Progeria or Hutchinson-Gilford Progeria syndrome, usually die a premature death due to their fragile nature. Nihal, in his short life, became a beacon of hope in a country unaware of his condition and gained respect from masses as a “fighter”.