It’s almost 11pm but Nihal Bitla, like most teenagers, is busy playing GT Racer – his favourite video game – on his iPad, when his little brother, Soumit, suddenly grabs the device and scampers out of the room.
‘Wait, let me finish,’ Nihal, 15, yells and attempts to run after his brother. But at just 128cm-tall and weighing 26kg he’s unable to catch up with the energetic four-year-old and within minutes, tired and breathless, he slumps into a chair. ‘Soumit, stop worrying your brother,’ their mother Sreedevi shouts.
It’s not the first time Soumit has been able to run rings around his big brother. For Nihal suffers from a rare genetic disorder called Hutchinson-Gilford progeria syndrome (HGPS) – a disease that affects one in four million and which ages patients eight times quicker than normal.
It means that even though he’s only 15, and clever, funny and charming, medically and physiologically he is 120 years old.
Nihal is aware that there is no cure for the condition and that patients rarely live to celebrate their 20th birthday. ‘I know I have a rare disease. But I don’t always keep thinking about it,’ he says. His teeth have fallen out, he has lost his hair, and his skin is wrinkly and dry like an elderly person’s.
‘The only thing I miss is playing outside,’ says the teenager who also has a younger sister Vaishnavi, 11, and lives in Bhiwandi, a town on the outskirts of Mumbai, in India. ‘I rarely step out of my house because strangers stop to stare at me and even tease me about my looks – all because of a Bollywood movie that completely turned my life upside down.’
Six years ago, in 2009, the movie, Paa, starring Amitabh Bachchan as a progeria sufferer, was released to commercial and critical success.
‘Until then, Nihal enjoyed going to school – Scholar Private School, about two kilometres away from home,’ says his father, Srinivas Bitla, 38, a businessman. ‘His friends would help carry his bag and would play with him and include him in all their games as far as possible.
‘But after Paa, Nihal lost his identity among his friends. Several of the neighbourhood kids and strangers began teasing him and calling him Auro, the character played by Amitabh in the movie. Because the movie was popular, even those who did not know that Nihal was suffering from a health condition realised that he had a problem and began to make fun at him. ’
Nihal was also becoming increasingly sensitive of taunts and jokes and when they began to increase, his spirit was broken.
‘So now, I just sit at home and spend time playing video games or with my younger brother and sister,’ says the boy.
At first, Nihal’s parents didn’t realise anything was wrong with their eldest child until he was 18 months old and dark patches began developing all over his body. ‘He would also constantly cry and had poor appetite,’ says his father. ‘We consulted doctors who said it was a skin condition and prescribed moisturisers.’
When his condition didn’t improve doctors suggested the boy undergo a series of blood tests and scans. ‘When the results didn’t show any condition the doctors were aware of, they simply washed their hands off it saying my son has an incurable disease.
‘He was small and very thin, but he was quite sharp and like any other child his age, so we didn’t think he could be having a major health problem.’
The couple contacted several doctors in the area but no one could tell them why he was not growing physically like other children. ‘Some five years ago, we read a feature about differently abled children and a doctor named Parag Tamhankar of the Genetic Research Centre, National Institute for Research in Reproductive Health, was quoted in it,’ says Srinivas.
They contacted the doctor and requested him to examine their son. ‘He conducted extensive blood and scan tests and found that Nihal was suffering from HGPS.
‘It was a severe shock to us,’ says Srinivas. ‘We hadn’t heard of the condition and did not know much about it at the time.
‘We read up more about it and were sad, very sad, initially.
‘But once we realised there was no cure, we decided to bring up our son as best as we could, providing him with everything he wanted and trying to realise every dream of his.’
Although Nihal’s body has aged extensively, mentally he is bright and has all the usual likes and desires of a boy his age.
Most of his favourite games are online as he cannot do a lot of physical activities. ‘I enjoy watching other kids playing outdoors from the balcony, but I’m scared to join them, because I fear I might be taunted,’ he says.
‘I prefer playing with my brother and sister indoors. I only feel sad when I see that my sister can carry Soumit but I can’t,’ he says.
His mother is also worried that he may get hurt easily because of his poor physical condition. ‘In case the kids push him, he may fall and hurt himself severely,’ she says.
Even if he were to step out and play, he tires easily and his joints ache because his cartilages have worn out. He gets breathless in no time because his heart and lungs can’t take the exertion. His hands are clawed, so ball games are out of his grasp.
‘I love visiting malls and watching movies. And I love pizza,’ he says. ‘I also enjoy playing in the open. And until a few years ago I used to go out and play with my friends from school regularly.’
Nihal used to enjoy talking and playing with his classmates. But after the movie the kids call him ‘old man’.
Nihal looks downcast when the movie is mentioned. ‘That film changed my life. People started making fun of my looks. It was extremely hurtful. I used to cry,’ he says. As he breaks down his father gives him a hug and tell him not to worry.
‘I guess the film was made with good intention – to spread awareness about the condition,’ says Srinivas.
‘But it had a negative impact on my son’s social life. He got so disheartened by this sudden development that he pleaded with us not to send him to school ever again. He couldn’t take the teasing and taunting.’
His teachers and several of his close friends requested him to return to school, but Nihal’s spirit was broken.’
The teenager now only steps out of his house when it’s absolutely necessary.
‘We try our best to fulfil all his wishes and dreams,’ says Srinivas. ‘Nihal loves video games and gadgets so I try to get him as many as we can afford.’
Nihal is also quite adept at repairing broken mechanical toys. ‘If any toy develops a snag, he will repair it, working for long hours over it,’ his dad says.
Of all his toys there’s one – a white robot that his father got him from the US – that he loves the most. ‘He can spend days playing with it,’ says Srinivas. The young boy is also passionate about painting. ‘Nihal loves art so we bought a set of colouring books and paint, and he often spends evenings painting,’ says his mother Sreedevi, a housewife. Over the past seven years, the boy has developed his own style of art. ‘I love art and enjoy painting. In fact I’d got one done and it was my dream to present it to my favourite Bollywood star Aamir Khan,’ he says.
‘I became his fan after I watched his movie Taare Zameen Par (Like Stars on Earth) when it was released in 2007.’
The movie tells the story of a dyslexic boy who excels in art but his parents, frustrated by his poor academic performance, send him to a boarding school where the new art teacher – played by Aamir – recognises the boy’s problem and helps him come to terms with the condition.
Nihal, who has a Facebook page (www.facebook.com/nihal.bitla), was so in awe of Aamir and the movie that he put up a post mentioning that he would be delighted if he had a chance to meet the Bollywood star. ‘I wanted to thank him personally for making the movie, which gave me the courage to face my condition and live with it.
‘I loved this movie and it was inspiring because it showed how one person, who is loving, caring and understanding, can help make a difference in the life of an individual,’ says Nihal. And late last year, Aamir spotted the Facebook post and promptly agreed to meet his special fan. He invited the boy and his family to his house in Mumbai.
‘I couldn’t believe my eyes when I saw Aamir uncle,’ says Nihal.
Aamir presented the boy with a hamper of goodies including toys and paint books. ‘We spent more than an hour with Aamir uncle at his house. I was truly overjoyed. It was a dream come true. I presented him with a painting of mine, which he appreciated.’
Nihal also posted a picture of Aamir and a plea for him to help spread the word about his condition. ‘I am feeling very optimistic and positive about life,’ he wrote. ‘I am sure you will help spread the word for the [US-based] Progeria Research Foundation to identify 60 more kids like me in India so that they can get the right treatment.’
The star was quick to respond.
‘It was lovely meeting you Nihal, along with your father Srinivas and your sister Vaishnavi. The beautiful drawing you made has been sent for framing and will be up in my room. I will look at it and remember you everyday. Lots of love,’ Aamir wrote on his Facebook page.
According to Nihal’s parents, the main problem their son faces is a social one. ‘People have no idea what this disease is,’ says Srinivas. ‘They just think he is so unusual. The unwanted attention, stares and curiosity make him extremely uncomfortable.’
‘Now, my motto is to spread awareness about the disease. That we should treat progeria-affected kids like normal kids.’ His mother Sreedevi too is hopeful that soon people would be more sensitive to such children.
‘Nihal is a normal teenager,’ she says. ‘He is very independent. He does all his work by himself. But we have sacrificed our social life. Be it going out, visiting relatives or going on a holiday, we have sacrificed them all so that he will not be exposed to strangers who might mock him or stare at him. We are willing to go to any lengths to protect our little boy. Our life now revolves around the kids. Their happiness is our happiness.’
The condition makes life truly difficult for the boy. Nihal often complains of headaches, gets bouts of vomiting, stomach pain, muscular pain and diarrhoea – a result of his body ageing rapidly. ‘So we have to be very careful about what he eats and when,’ his mother says. ‘But after we started participating in the clinical trials, these problems have decreased a lot,’ she adds. Two years ago the family was told that there was an option for Nihal to participate in a clinical trial by the Progeria Research Foundation in Boston. ‘We – and Nihal – agreed,’ says Srinivas. That led to Nihal undergoing clinical trials for a cancer drug that doctors hope will slow the ageing process.
Last year, an excited Nihal visited the Boston centre to participate in a clinical trial.
According to his parents, more than the international trip, he was excited about the fact that he would get to meet kids like him in Boston.
‘The doctors were very cooperative,’ Nihal says. ‘Apart from the treatment, I got to roam around the city. People didn’t stare at me when I walked in the parks, let alone tease me. That environment gave me confidence to walk freely on roads.
‘When I came back to India I decided not to wear a cap. But when we landed in Mumbai airport and tried to catch a rickshaw, the driver started staring me and I immediately put my cap on,’ he says.
Back home, Nihal gets busy with painting, gaming or whatever pleases him. At times, he offers to help his sister Vaishnavi, a grade 6 student, with her homework.
Earlier, Nihal used to ask questions regarding his condition, says Srinivas. But now he has got to know about his disease and is at peace with that. ‘I really don’t know what my future is going to be. But it doesn’t worry me,’ says Nihal.
Since childhood Nihal has been nursing three dreams.
First, a ride in a Lamborghini, which was fulfilled last year by the car company when they heard about him through a charity. Second, to meet Honda’s Asimo robot.
Third, to visit Disneyland in California.
If all goes well, his second dream could be fulfilled next month. The makers of Asimo have contacted him and invited him for a meeting, though the dates haven’t been confirmed as yet. Very few progeria sufferers live past the age of 20 and it is too early to say if the drugs will have an effect on his longevity. But the doctors – and his parents – are optimistic.
‘Nihal’s body flexibility has increased and spots on his skin have decreased,’ says Srinivas. ‘Both are good signs.
‘Though the doctors have told us that there is no cure for this condition, the treatment has definitely helped arrest the speed of ageing to a great deal.’
Dr Tamhankar, who has been caring for Nihal for four years now, is optimistic. ‘It is very early to comment on the life expectancy of Nihal. But there is improvement in his health. He is putting on some weight – a good sign. ‘He’s been on the trial for only one-and-a-half years so it’s still early stages. But it has definitely given him a morale boost.’
Nihal doesn’t spend his time worrying about how much time he has left, or about his illness. ‘All I know is that I have the rare power of being young and old at the same time,’ he says.
‘My condition has made me believe that we should make the most of our time on earth. We should live life in the most incredibly beautiful way.’