By Haziq Qadri @haziq_qadri

A YOUNG boy with a ultra-rare genetic condition that makes him look like an old man has defied doctors to celebrate his fifteenth birthday

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Videographer / Director: Virendra Khanna
Producer: Haziq Qadri, Nick Johnson
Editor: Sonia Estal

Defying the doctors: Nihal Bitla celebrates his 15th birthday

Nihal Bitla, who lives in Bhiwandi on the outskirts of Mumbai, India, has Hutchinson-Gilford progeria syndrome (HGPS) - which ages his body eight times faster than normal.

The condition leaves Nihal bald, with heavy wrinkles and severely weakened limbs.

Inspirational Nihal has an ultra-rare genetic condition that makes him look like an old man

The average life expectancy for children with progeria is 14, with many dying from a heart condition called arteriosclerosis, which usually affects adults over 60.

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

Behind the wheel: Nihal sits in the drivers seat of the car with his father

But Nihal blew out the candles on his 15th birthday cake on January 20, 2016, making him the oldest living child diagnosed with progeria in India.

And despite the challenges posed by the syndrome, the teenager remains positive about his future.

Nihal Bitla poses for a photograph whilst standing on a fire engine in Boston, Massachusetts
Nihal was forced out of school by bullies who targeted him for his unorthodox appearance, but is now one of the figureheads of the Progeria Research campaign

Nihal said: “I have never felt that this is a disease, because I’m a special child. This is like a God’s gift to me.”

Nihal’s dad Srinivas Bitla, who owns a mobile phone repair shop, says his son started developing marks on his body months at an early age.

The incredible 15-year-old poses in front of a bright green Lamborghini

Srinivas said: “Nihal wasn’t like this since birth. A couple of months into his life, he started developing spots.

"We thought those were blemishes on his skin probably. Then we thought it was a genetic problem. However, after visiting a lot of doctors, we were told that this was a case of progeria.”

The condition leaves Nihal bald, with heavy wrinkles and severely weakened limbs.

Doctor Parag Tamhankar, a medical geneticist and a paediatrician at the Genetic Research Centre in Mumbai, finally diagnosed Nihal with progeria five years ago.

He said: “When I met Nihal in 2011, I heard the family's complaints that Nihal has started looking like an old man, right in his childhood.

"At that time he was a 10-year-old kid and he had started looking like a 60-year-old. I knew it was something like progeria.”

Dr Parag Tamhankar, a paediatrician at the Genetic Research Centre, finally diagnosed Nihal with progeria five years ago.

As well as the visible symptoms of accelerated ageing, Nihal also suffers a variety of health issues as a result of his condition.

Dr Tamhankar added: “Nihal has a lot of physical problems. His joints are stiff and his stamina has decreased over the years.
"He had a few episodes where his joints got dislocated spontaneously, including his shoulders.

“Even while changing his clothes he fears that his joints can get dislocated."

Positivity: despite the challenges the teenager remains positive about his future

The brave youngster was initially able to attend school, but was eventually forced out by bullies who targeted him for his unorthodox appearance following the release of the Bollywood movie ‘Paa’ – a movie about a progeria patient named Auro.

"Nihal used to go to school regularly and never faced any problems. A few of his friends would help him to carry his bag, as he was unable to carry it himself,” dad Srinivas said.

“After the movie ‘Paa’ was released, kids used to bully Nihal by calling him ‘Auro’. Even people outside the school started taunting Nihal by calling him Auro.”

“Nihal said people were bullying him too much and didn’t want to go to school.

Family first: Nihal and his supportive family

"Then his health started deteriorating and it became difficult for him to carry his bag. So we decided to pull him out.”

Now Nihal spends his days playing with toy robots, surfing the Internet and painting, while his 11-year-old sister Vaishnavi helps him with studies.

Nihal said: "I go out with my sister, I play with her, she looks out for me. If someone calls me names, she beats them up."

And while his body shows the signs of rapid ageing, Nihal has the mental age of a regular 14-year-old.

While Progeria is incurable, the Progeria Research Foundation in Boston has been pioneering a drug treatment to combat the heart problems.

Doctor Parag Tamhankar, a medical geneticist was the one to finally diagnose Nihal with progeria

Nihal travelled to Boston, America, in December 2014 for free treatment - which appears to be having a major impact.

Srinivas said: “There have been a lot of visible changes in Nihal’s health - for example, his body flexibility.

"Earlier, he was not able to bend or stoop. But now he is able to do that."

Await that time may be running out, young Nihal is determined to work through his bucket list - including getting taken out for a spin in a Lamborghini.

Dinesh Chindarkar, co-founder of MediaMedic Communications, said: “The first activity we did was that since Nihal loved Lamborghini so much you know, we took him, we wrote to Lamborghini, and Lamborghini was kind enough to invite us to their showroom in Mumbai.

As well as the visible symptoms of accelerated ageing, Nihal also suffers a variety of health issues

"We took him around, and he had that experience of moving around in a Lamborghini, which was something on his wishlist."

NIhal added: "I had three dreams: one was riding a Lamborghini, that’s been fulfilled.

“My second wish was of meeting Honda ASIMO [an AI robot]. That will happen soon.

"I still have Disneyland to visit too. There are a lot of rides and I like the Giant Wheel the most, especially the one with Mickey Mouse."

As well as assisting with treatment, the Progeria Research Foundation and their media partners are also trying to raise awareness of the condition, especially in India where they hope to find and help more children with Progeria.

While his body shows the signs of rapid ageing, Nihal has the mental age of a regular 14-year-old

Audrey Gordon, president and executive director of the Progeria Research Foundation, said: “Our search for more children with progeria continues.

"There are an estimated 300-350 children living with progeria worldwide at any one time, but right now we only know of 125.

"That is why we call the campaign “Find the Other 150”. Statistically, about one third of the unknown children live in India – undiagnosed and untreated.

"So far three children from India have been identified and helped by The Progeria Research Foundation. We need to continue to find as many children as we can. All children with Progeria must have the opportunity to benefit from our efforts to find treatments and a cure."

Nihal has been at the heart of the social media campaign - and is determined to help others with his condition.

He said: “There are many more in India who are like me. It’s my wish that all of them should get quality treatment.”