the doctors were confused as they were not sure what her medical condition could be. Although it has never been confirmed, but the doctors believe it is neurofibromatosis, a rare deformity that causes tumors to grow along nerves. After several efforts to control the growth, the doctors were left with no choice than to tell Khadijat and her parents that there was nothing else they could do.
“I gave birth to Khadijat at home. Said Khadijat’s mother Amina Bibi 50. She was born with heavy thick eyelids and could not open her eyes. We didn’t think much of it until we realised she could not open her eyes properly and she looked different from other kids. We took her to the hospital where she was admitted for 6 months, the Doctors did all sorts of tests and at the end they told us there was nothing they could do and if we attempt surgery she could die. Because of that we never went back to seek other medical help and we have lived with that fear, as Khadijat also got older she refused any help and refused to have surgery she says she does not want to risk dying.”
I’m made this way and I accept it graciously said Khadijat I do what I can. If this is how I’m meant to be then I will 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’m happy in this life, if only the government would see my condition 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 will need to do a gene test.
There is a possibility she has a tumor within her face which could be fatal, but right now there is no way of knowing. If she is willing we could do a series of tests to determine how successful a surgery would be.