Nihal Shrinivas Bitla, who was diagnosed with progeria as a child, has succumbed to the disease at the age of just 15 at a hospital in Karimnagar in Telangana this week.
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Nihal was very active in spreading awareness about this rare condition and also was the face of the Progeria Research Foundation’s campaign that is actively working towards finding undiagnosed kids with the same problem, in India.
According to Team Nihal, he had been suffering from arthritis for a while, News18 reported. Nihal, who lived with his two siblings and parents at suburban home of Bhiwandi, had travelled to his native place for a wedding ceremony. Doctors suspect that Nihal’s hardened arteries, a condition common in the elderly that restricts blood flow, contributed to his sudden death.
One of his doctors, Dr Parag Tamhankar from the National Institute for Research in Reproductive Health, said that when he was 10 he already had the body of a 60-year-old. Of the estimated 60 children in India with the disease, we know only five.
Progeria or Hutchinson-Gilford Progeria syndrome, from which Nihal suffered, causes accelerated ageing in children, leading to premature death mostly due to heart attacks.
He ran an active social media campaign to raise awareness about the disease.
Aamir Khan met Bitla following a Facebook post, where it was mentioned that the latter wanted to meet him.
The average lifespan of a child with Progeria is 13 years but Nihal was fortunate enough to strike the items from his bucket list. He liked painting and had the opportunity to personally gift one of his works to actor Aamir Khan. 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.
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He said: “During the first year, signs and symptoms, such as slow growth and hair loss, begin to appear”. Those diagnosed with the disease have a low life expectancy, and most do not survive beyond their teenage years.
