15-year-old Indian boy who suffered from rare genetic disorder that made him look 60 years, dies

A 15-year-old boy who suffered from the rare genetic disorder called progeria, died at a hospital in Karimnagar in Telangana, India, on Tuesday, May 3.

Nihal Shrinivas Bitla was instrumental in creating awareness about the disorder in India, and was the face of the Progeria Research Foundation’s campaign to detect undiagnosed children living in India.

 

Hutchinson–Gilford progeria syndrome, commonly known as progeria, is an extremely rare condition where a child ages eight times faster than normal and hence has a much shorter life span than children their age. Such children usually die from a heart attack or stroke.

Nihal and his family, who live in Bhiwandi, were in Telangana to attend a wedding. As he was severely dehydrated, the teen was admitted to a local hospital. Doctors suspect that Nihal’s hardened arteries, a condition common in the elderly that restricts blood flow, contributed to his sudden death.

Dr Parag Tamhankar from National Institute for Research in Reproductive Health, who had diagnosed Nihal when he was 10, said the boy appeared like a 60-year-old despite his age. Nihal was brought to him with complaints of stiffness of bones and wrinkles all over his face.

In 2014, Nihal along with three-year-old Ishan, another child with Progeria from Satara, went to Boston, US, to undergo a clinical trial of a cancer drug meant to slow accelerated ageing.

In December 2015, Bollywood actor and producer Aamir Khan made Nihal's dream come true by meeting him. The youngster who received gifts from Khan said he made him feel "optimistic" about life.

Aamir Khan met Bitla following a Facebook post, where it was mentioned that the latter wanted to meet him. After their meeting, Nihal posted on Facebook photos writing:

"Thank you Aamir uncle for making my dream come true. Your Taare Zameen Par always inspired me to face adverse situations and I was always knew that one day I will meet you."