India's face of Progeria disease Nihal Bitla dies in Telangana

Hyderabad: Fifteen-year-old Nihal Bitla, India’s first recognised Progeria patient breathed his last around 11.30 pm on Monday night at his native place in Telangana. Progeria or Hutchinson–Gilford Progeria Syndrome (HGPS) is an extremely rare genetic disorder characterised by premature aging symptoms and it affects 1 per 8 million births.

Nihal 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 across the country. Nihal, who lived with his two siblings and parents at suburban home of Bhiwandi, had travelled to his native place for a wedding ceremony.

Sources close to him, however, said that the climatic conditions in Telangana did not suit Nihal’s weakening body and his condition started to deteriorate owing to dehydration on Monday evening. “The family immediately called for an ambulance but he fell unconscious on the way to the hospital and was pronounced dead,” said a close family friend.

Nihal had become quite a popular figure due to the Progeria awareness campaigns that he was part of. He had once said that it was his dream to meet actor Aamir Khan as he was a big fan and had loved his movie Taare Zameen Par. His dream came true in December when Aamir paid him a visit at his home.

The teenager was also an admirer of Asimo Robots and Lamborghini and was part of special events organised 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.

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 his admirers, it has also given them courage and will power to fight the condition.