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Nihal Bitla, face of progeria campaign in India, passes away at age 15
Nihal Shrinivas Bitla, a 15-year-old, and face of the rare genetic disorder, `progeria' in the country, succumbed to his death, due to vital complications caused by the disorder, at a hospital in Karimnagar in Telangana, on Tuesday.

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.

Widely known as progeria, Hutchinson–Gilford progeria syndrome, is a state wherein a child grows 8-times faster than a normal kid. Hence, such kids have a very short life span and usually, die from strokes, heart attack or other related complications. So far, there is no known cure or treatment for the disorder.

Nihal's death from complications of the disease, was made public on his Facebook page, managed by Boston-based Progeria Research Foundation. Nihal along with his family lived in Bhiwandi, but the family had travelled to Telangana to attend a wedding, where Nehal's slowly weakening body was unable to bear the harsh climate. Nihal got highly dehydrated, and had to be admitted to a nearby hospital.

As per doctors, Nihal could have developed hardened arteries (a common problem in elderly that restricts blood flow), that caused his sudden death. Dr Parag Tamhankar from National Institute for Research in Reproductive Health, had diagnosed Nihal of suffering from progeria at the age of 10. As per him, Nihal looked like a 60-year-old man, despite his very young age. Nihal had problems like stiffness in bones and wrinkles all over his face, when he had consulted Dr Parag.

Recently, Nihal, along with 3-year-old Ishan (another kid with progeria), had visited the US, to have a cancer drug created to slow down aging tested on them.

The campaign named #finding 60, is working towards finding undetected cases of progeria in India with the help of Nihal's team. Nihal's efforts brought results when similar cases of 5-year-olds Aditya from Rajasthan and Prachi from Patna were found. While, in 2009, just 56 children were diagnosed with progeria worldwide, with their efforts, now 125 children have been found, according to the foundation.

But, during this course of time, Nihal had to stop going to school due to vital symptoms, despite his active efforts towards raising awareness.

Fond of painting, Nihal got an opportunity to meet Bollywood actor Aamir Khan he had personally gifted him one of his work. After finding out the boy wanted to meet him, Khan met Nihal.

Aamir with Nihal

Generally, children with progeria appear normal at birth, but "During the first year, signs and symptoms, such as slow growth and hair loss, begin to appear. There is no complete cure for this disease but with the new drug treatment, the life expectancy of these children can get extended and quality of life may improve," said Dr Tamhankar, earlier to Hindustan Times.

An average lifespan of a child with the disorder is 13 years, but Nihal made it to 15. He loved Asimo robots, Lamborghinis and Aamir Khan and he made his both wish fulfilled before leaving this world, by riding a Lamborghini and meeting childhood love Aamir Khan.

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