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Nihal, face of India Progeria campaign, dies at 15

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Telangana - Nihal was a healthy child at birth, and was diagnosed with the rate genetic disease at the age of 4.

Published: Wed 4 May 2016, 12:28 PM

Updated: Wed 11 Jan 2023, 4:31 PM

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Nihal Bitla, the one-of-a-kind 15-year-old boy who was suffering from rare genetic disease Progeria passed away in Telangana on May 2.

According to media reports, it is said that one in four to eight million births undergo genetic mutation and Nihal's case was one of them, which resulted in Progeria. Nihal was a healthy child at birth, and was diagnosed with the rate genetic disease at the age of 4.

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.

Image courtesy: Times Now/Twitter

Aamir Khan fulfills Nihal's dream

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.

Image courtesy: Daily Mail

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.

In one of his last interactions with Humans of Bombay, Nihal had said:

"To be honest I don't know much about the illness I have, except that I have the rare power of being young and old at the same time. That makes me believe that I can send a message to people. A message that life can go by quickly and that each day is more valuable than the next. I also believe that everything happens for a reason and I'm happy everyday. The way I look at it I've been given a finite time to do everything I love every single day without fear. Above all, I hope that people know that our time here is special and life is incredibly beautiful in every single way."

WHAT IS PROGERIA?

Hutchinson-Gilford Progeria Syndrome ('Progeria', or 'HGPS') is a rare, fatal genetic condition characterised by an appearance of accelerated ageing in children.

Its name is derived from the Greek and means 'prematurely old'.

While there are different forms of progeria, the classic type is Hutchinson-Gilford Progeria Syndrome, which was named after English doctors Dr Jonathan Hutchinson and Dr Hastings Gilford who first described it in 1886 and 1897 respectively.

HGPS is caused by a mutation in the gene called LMNA.

The LMNA gene produces the Lamin A protein, which is the structural scaffolding that holds the nucleus of a cell together.

Researchers now believe that the defective Lamin A protein makes the nucleus unstable.

That cellular instability appears to lead to the process of premature aging in Progeria.

Although they are born looking healthy, children with progeria begin to display many characteristics of accelerated ageing at around 18-24 months of age.

Progeria signs include growth failure, loss of body fat and hair, aged-looking skin, stiffness of joints, hip dislocation, generalised atherosclerosis, cardiovascular (heart) disease and stroke.

The children have a remarkably similar appearance, despite differing ethnic backgrounds.

The average life expectancy for children with progeria is 14.

Many sufferers die from a heart condition where the arteries become hard and narrow - which usually affects adults over 60.

As a result, children with progeria are prone to heart attacks and strokes aged ten or under.

Source: Progeria Research Foundation



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