A teenager whose rare condition has left him with a sagging face is too scared to leave his own village.
Bhupinder Singh, from India, lives as a recluse because he is terrified people will stare at him and make cruel remarks.
The 16-year-old suffers from neurofibromatosis, a genetic condition which causes uncontrollable growths along the nerves.
Bhupinder Singh, 16, won’t leave his village in India because he is terrified people will stare at him and make cruel remarks
He was born with a small tumour on his right eyelid – but as he got older it grew until it engulfed half his face.
As a result, he is unable to see, eat or speak properly.
He was shunned from school because of his unusual appearance, leaving him too scared to leave the safety of his village where he is accepted by friends and family.
‘People in my neighbourhood accept me, but when strangers see me they stare and whisper, and shout out cruel taunts,’ he said.
‘They say I’m a freak, and that it looks like I’m melting. I try not to let it get to me, but it’s made me scared to leave my neighbourhood.
‘I prefer to stay here where people know me, and accept me for who I am rather than what I look like.
Dubbed the modern-day ‘elephant man’, he suffers from neurofibromatosis, a genetic condition which causes uncontrollable growths along the nerves. But his family and friends accept him for who he is
Despite his fear, Bhupinder is just like any other energetic, spirited boy of his age – as he has learnt to love cricket
‘It’s hard being different, but I try to stay positive and despite everything I live a happy life.
‘It does not matter if I ever get cured or not. I am a happy person and I have a very loving and caring family.’
Despite his appearance, friends say Bhupinder is just like any other energetic, teenager and has learned to love cricket.
Although he can’t go to school, he reads books every day – mainly in his favourite language, English.
He manages this despite suffering excruciating pain due to being blind in his right eye.
Bhupinder said he dreams of becoming a chef and spends his days helping his mother in the kitchen by cooking and chopping vegetables.
Hi mother Kaushalya Devi, 45, learned of his condition while she was pregnant.
‘Doctors had informed us about a tumour on his right eyelid after conducting an ultrasound during my pregnancy,’ she said.
‘They had told us about the possible consequences, but I was in the sixth month of the gestational period and had no way to terminate it.
‘So my husband and I decided to bring him into this world and give him the best possible life.
‘And even though he had a very tiny bump on his eyelid, he was just like any other normal child. He was beautiful and always smiling.’
When he was just nine years old, his face started to droop so drastically that he had to undergo emergency surgery
Kaushalya and her husband Ram Dayal, 50, took Bhupinder to a doctor for the first time when he was seven months old.
They revealed there was no way to control the growth and an operation wasn’t possible until he turned 20.
She claims they were just sent back home with medicines that sadly never worked.
But as Bhupinder grew up, his face started to droop so drastically that he had to undergo emergency surgery when he was just nine years old.
Mr Dayal said: ‘His face had drooped so much that we had to request doctors to do something.
‘Even though they did not give us any assurance, we were hopeful of some magic.’
Bhupinder was admitted to Postgraduate Institute of Medical Education and Research (PGI) – where his father works.
Medics advised the family to take Bhupinder to more specialist hospitals in New Delhi – but they couldn’t afford the treatment.
Kaushalya said: ‘We have not taken him to any bigger hospital because we have no resources.
‘All the surgeries had been possible at PGI because my husband works there, and we did not have to pay for the treatment.
‘We cannot afford the expensive treatment – we do not know if it would even get rid of the tumour.’
NEUROFIBROMATOSIS: THE ‘ELEPHANT MAN’ CONDITION
Bhupinder was born with the condition but it developed over the years
Neurofibromatosis the name for a number of genetic conditions that cause swellings or lumps.
Although many people who have the condition inherit it from one of their parents, up to 50 per cent develop it randomly from a gene mutation before they are born.
Despite their alarming appearance, the growths and swellings – called neurofibromas and caused by a growth of cells – are not cancerous or contagious.
The condition has long been associated with the ‘Elephant Man,’ the name given to Joseph Carey Merrick, who was severely disfigured.
However, in 1986, a new theory emerged that Mr Merrick may actually have had Proteus syndrome, a condition which involves symptoms such as abnormal growth of the bones, skin and head.
The confusion was again compounded in 2001 when it was proposed that he had suffered from a combination of neurofibromatosis type one (NF1) and Proteus syndrome.
However, DNA tests on his hair and bones have proven inconclusive.
Other symptoms of neurofibromatosis type one include flat, light brown spots on the skin.
These harmless marks, also called cafe au lait spots, are common in many people. People who have more than six spots that are bigger than half a centimetre wide should get investigated for NF1.
NF1 is a condition someone is born with, although some symptoms develop gradually over many years. The severity of the condition can vary considerably from person to person.
People with NH1 are more likely to suffer from learning difficulties and behavioural problems, a type of cancer known as malignant peripheral nerve sheath tumours, which affect around 10 per cent of people with NF1 over their lifetime, vision problems, high blood pressure and a curved spine.
Nepalese man desperate to raise £30,000 for life-changing surgery in the US
Ashok Shrestha’s growths are so severe they eclipse the entire right hand side of his face, covering his eye, nose and mouth
Ashok Shrestha suffers from the same condition as Bhupinder Singh.
The 54-year-old’s growths are so severe they eclipse the entire right hand side of his face, covering his eye, nose and mouth.
A doctor from the US offered the man from Nepal life-changing surgery after four previous operations didn’t work.
He is now desperate to raise £30,000 to travel to Chicago to go under Dr McKinnon’s knife at Presence Saint Joseph Hospital.
Mr Shrestha said: ‘Because the mass has grown this huge, I face great difficulty in eating and drinking.
‘If the treatment works then I could have a normal life like everyone else.’
The treatment is going to cost £25,000, while he also needs an additional £5,000 to cover his travel, medication and expenses during the treatment period.
And he is being helped in his fundraising endeavors by British-based musician Kristina Allen, 20, who is half-Nepalese and set up a page on crowdfunding site GoFundMe to help him reach his target.
She said: ‘I hope we can get people around the world to help Ashok get this treatment, and help him get proper medical aid, as soon as we can.’
More than £11,000 has already been raised through his donation page, meaning surgery for his condition may finally be within reach.
To donate to his campaign, visit https://www.gofundme.com/together4ashok, or follow the campaign on Twitter using the hashtag £together4ashok