‘A Ray of Hope’ dies…

image courtesy:Team Nihal

image courtesy:Team Nihal

Nihal Shrinivas Batla, who had become a face of famous campaign ‘Finding the next 60’  passed away  on Thursday, at Karimnagar in Telangana.

The 15-year-old boy was attending a marriage ceremony at Karimnagar, where his grandfather and family live. Severely dehydrated due to extreme heat, the boy was taken to a local private hospital for treatment and he took his last breath in next few hours, as per the reliable sources. His last rites were performed in Karimnagar yesterday, the family sources said.

Nihal Batla from Bhiwandi, who was a victim of rare genetic mutation named ‘Progeria’ had become a familiar face being an ambassador of ‘Finding the next 60’ campaign. Progeria (Hutchinson-Gilford progeria syndrome) is a rare condition in which a child ages eight times faster than the normal ones causing it to a premature death.

The symptoms of the rare disease first appeared when Nihal was of age 4. Even though he was 10, he looked like 60, the doctor quoted, recalling the day when the boy was brought to him with the complaint of stiffness in joints and unusual wrinkling face. The disease is believed to be an extremely rare genetic disorder, where one child in four-eight million can come under the radar of this rare genetic mutation. And unfortunately, Nihal was one of them.

Nihal Batla along with his parents has worked restlessly in terms of spreading awareness about Progeria across India. His ‘Hats on for Progeria’ fundraiser event, in which he requested the Mumbaikars to take a picture with him and post on social media, had become a massive hit. The ‘Finding the next 60’ campaign in association with Boston-based Progeria Research Foundation (PRF) is having an objective of finding 60 Indian progeria victims and has got an incredible support from nationwide, including the Bollywood star Aamir Khan. Mr. Perfectionist made no delay to pay him a visit when he heard about Batla’s desire to meet him through social media. The duo had a good time exchanging gifts and clicking photos.

It was estimated by the works of Nihal Batla and the team that at least 60 children are suffering from Progeria and very less have been diagnosed including him. The contribution of Nihal Batla and PRF has thrown limelight on similar cases of Progeria across India like Aditya (Rajasthan) and Prachi (Patna), both five-year-olds. Nihal was also a part of a study conducted in Boston, the United States in connection with the age-delaying drug called Lonafarnib in 2014.

As far as an expert opinion is concerned, the children appear to be normal at birth and show gradual symptoms like hair loss or slow growth with time. Also, as these children have shorter life span compared to others, they are prone to heart-related diseases leading them to premature death.

If Amitabh Bachchan’s ‘Paa’ has brought Progeria to the mainstream knowledge of society, Nihal and his exceptional love for life will remain as a ‘ray of hope’ for all those unknown children who silently suffer from Progeria across the globe.

*By Prasad K

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