[Disclaimer: Dear community members, The Logical Indian’s intention of covering this story is to highlight it and bring it to notice of the authorities, so they can help Mithun in getting the required treatment. We do not endorse any crowd-funding website as we cannot assure the authenticity of the platforms. Please validate before helping or try to reach out to the family directly.]
Like most 16-year-olds, Mithun Chauhan’s mind is occupied by three things: Going to school, playing with his friends and, of course, girls. But after a rare genetic condition left his body covered in large swollen lumps, the young man has convinced himself he is destined to wander through life alone.
He spends every waking hour inside his home in Navada in Bihar because his misshapen face terrifies the locals, who have branded him ‘Ghost Boy’, and he cannot go to school either because other children flee at the very sight of him.
“Why have the Gods condemned me to a life like this?” the Indian teenager muttered through the lumps of inflamed skin that obstruct his mouth, nose and eyes. It is because of my looks that my childhood friends have abandoned me. Now nobody wants to play with me.
“It because of my looks that I cannot go to school or simply take a stroll in the neighbourhood.”
His family claims that the sores spread across his body after a ‘quack doctor’ in Bihar gave him the wrong medicine to treat a painful mole when he was five. The swelling around his face is so severe that he struggles to eat, see and breathe.
“After taking the medicine, my child’s face started swelling. His entire body turned red like copper,” said his father Ramji Chauhan, who makes around £3 a day as a labourer. Ramji and his worried neighbours feared the gods have ‘cursed’ the boy, so they have been praying every day and performing every ritual they could think of to cure him.
It was not until recently when they took him to medical expert Dr Ashwini Dash, that he was diagnosed with neurofibroma, a very rare genetic disorder that causes tumours to grow along with your nerves. There is no known cure for the severest form of the disease, which afflicts around one in 33,000 people, but Indian doctors believe Mithun can be cured.
“It only warrants surgery if obstruction of eye, mouth nose or natural orifices is there,” said Dr Dash.
Mithun’s parents are desperate for him to get an education but until his condition is treated no schools will accept him as a student for fear that he ‘would scare away the normal kids’. He was admitted to a local primary school aged eight but on his first day, the children were revolted by the sight of him.
They called me a ghost and started running for their life as if they had a seen a real one, said Mithun. And unlike his carefree childhood friends who abandoned him, he cannot even bear to look at his reflection or go out in public.
He said: “I am really scared of the image that I see in them. I usually stay at home during the day to avoid people. If women and children see my face, they freak out and run away saying, ‘Ghost! Ghost!’ My parents have forbidden me to go out at night as people tend to get more scared of seeing my face at night.”
I spend most of my time alone at home. I have no friends. There is no one to talk to. I don’t know what the point of my life is.”
One medical expert, who did not want to be named, said Mithun’s illness is treatable. He said: “The operation, which would be done in phases, would cost at least Rs 3,00,000 (£3,500).”
Doctors have told Ramji to take his son to more advanced facilities in Delhi or Mumbai, but he barely earns enough to feed his family.
The heartbroken father said: “The condition has robbed him of his childhood already. It is very painful to see and hear people hating your child for his physical appearance and calling him a ‘ghost’.”
The Logical Indian intention of doing this story is to highlight it and bring it to notice of the authorities, so they can help Mithun in getting treatment. We don’t endorse any crowdsourcing website as it is difficult to track the donations and how they are spent. Please validate before helping or try to reach out to the family directly.