Nihal Bitla (15), a Mumbai teenager who had been suffering from a rare genetic disease that causes the body to age eight times faster than normal has died. He was the face of India’s awareness campaign against progeria. Bitla made headlines while trying to locate 60 other Indian progeria sufferers to participate in a clinical trial in Boston with him. He ran an active social media campaign to raise awareness about the disease. Most recently he fronted an awareness campaign called #HatsOnForProgeria, where he appeared with a group of supporters at Mumbai’s iconic Chhatrapati Shivaji railway station. He had also appeared at a #RunForProgeria event in the southern city of Bangalore.
Bitla shot into the limelight after he met Bollywood actor Aamir Khan in December after the Facebook page “Humans of Bombay” highlighted his story and the fact that he was a “super fan” of the star. He died in hospital on Tuesday in the southern state of Telangana, where he had gone to attend a wedding. Indian social media is full of tributes to Bitla, with many calling him a “fighter” and an “inspiration”.
Did You Know?
- Progeria or Hutchinson-Gilford progeria syndrome causes accelerated aging in children, leading to premature death mostly due to heart attacks.
- It is incurable and has an incidence of one in four million.
- Nihal, while aged 15, had a body that felt like it was beyond 60 years old.
- There are 124 other such children who have been identified with progeria globally.
- The Progeria Research Foundation, however, estimated there are over 250 such children fighting this disease of which 60 are from India.
May His Soul Rest in Peace!!!