Khadija Khatoon Khadija, 21, from
Kolkata, West Bengal, Eastern India, was born without a face and her
mouth is a small slit on the left side of her face. When she was born,
concerned doctors were baffled by her condition for months. Although it
has never been confirmed, they believe she has a form of
neurofibromatosis, a rare deformity that causes tumours to grow along
nerves. Medics told Khadija and her family there was nothing they could do after extra skin continued to grow out of control.
"She was born at home but she didn’t open her
eyes. She was born with thick heavy eyelids and she looked different to
my other children at birth but we didn’t think anything of it until we
realised she couldn’t open her eyes properly." hermother Amina Bibi,50, said.
"When we took her to
the hospital she was admitted for six months and they did lots of tests
but doctors eventually told us there was nothing they could do. Because the doctors told us there was nothing they could
do we never went back to them. And as Khadija got older she refused any
help. Doctors told us when she was a baby that if she attempted
surgery she could die, so we have lived with that fear. Now that Khadija
is much older she has decided herself that she doesn’t want to have
surgery. She doesn’t want to risk dying."
Khadija said:
"I'm made this way and I accept it graciously. I do what I can. If this
is how I’m meant to be then I live with it. It’s not a matter of
coping, I just live as I am"
She continued: "I don’t have any real friends but I have my family.
My family is my only friend and I love them dearly. My parents are my
world. I don’t talk to strangers. This is who I am and this is
the life I live and I fill my days sitting and thinking, talking to my
mother about life and going for walks near my home. I like drinking tea.
I am happy in this life"
"If only the government would see my position and help me, I would like that"
Dr Anirban Deep Banerjee, a neurosurgeon from Apollo Hospital,
Kolkata, said:
"I believe she is suffering from Neurofibromatosis but to
confirm we would need to do a gene test. There's a possibility
she has a tumour inside her face which could be fatal. Right now there
is no way of knowing if she has tumour inside the extra skin and if left
they could kill her."
"If she's willing we would need to do a lot of tests to determine how successful surgery would be."
Source: Daily Star
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