Mithun Chauhan, 16, is covered in large swollen
lumps, and his condition has convinced himself he is destined to wander through
life alone. He spends his life 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 because other children
flee at the very sight of him. He asked: "Why have the Gods condemned me
to a life like this? "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
the sores spread across his body after a 'quack doctor' in Bihar state gave him
the wrong medicine to treat a painful mole when he was five.
The swelling around his face grew so severe that he
struggles to eat, see and breathe. His father Ramji Chauhan said: "After
taking the medicine, my child's face started swelling. His entire body turned
red like copper." Mr Chauhan and his worried neighbours feared the gods
had 'cursed' the boy, so they prayed every day and performed 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 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
believes Mithun can be cured.
Dr Dash said: "It only warrants surgery if
obstruction of eye, mouth nose or natural orifices obstruction is there." 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 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. Mithun
said: "They called me a ghost and started running for their life as if
they had a seen a real one." And unlike his carefree childhood friends who
abandoned him, he cannot even bear to look at his own 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 300,000 rupees (£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 told:
"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'."
To support Mithun and help defeat Neurofibroma
donate here: ketto.org/fundraiser/mithun
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