Young Woman Lives with a Major Facial Deformity


Facial Deformity

Young Khadija Khatoon has lived her entire life with a medical condition known as neurofibromatosis. Her situation is so severe that she doesn’t even know if she has eyes or a nose. Her mouth is just a small slit on the left side of her face. The doctors have told her there is nothing that can be done to help her.

Born In India
Khatoon was born in Kolkata in the eastern part of India to an impoverished family. When she was first born she had thick eyelids that have prevented her from seeing her parents or other family members or anything else in the world. Through the years, as she grew older, her deformity grew out of control.

No Education
The young lady has never attended school. She has mostly been rejected by everyone in her community. Even so, she says she is happy with her life. She stated, “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. My family is my only friend and I love them dearly. My parents are my world. If only the Government would see my position and help me I would like that.”

She Says Her Days Are Fulfilling
She does not complain about her life. She said her days consist of sitting and thinking. She talks to her mother about life. She also goes for walks near her home. She said she likes drinking tea. “I am happy in this life,” she says.

Parents Realize She Had Problems
Her father, 60 and her mother, 50 realized there was a problem when she didn’t open her eyes during the two months following her birth. Her mother said, “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 realized she couldn’t open her eyes properly.”

Parents Take Her To Hospital
When her parents took her to the hospital, she was admitted and spent the next six months of her life there as a patient. The doctors performed numerous tests which resulted in them finally saying there was nothing they could do. The mother said, “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.”

Khadija Makes Her Own Decision
Dr. Anirban Banerjee, from the Apollo Hospital in Kolkata, said that the young woman could have a “fatal tumor” inside her face. He has urged the parents to take her for a gene test. A local government officer, Rupak Dutta, has taken on the case to raise money for a life-changing surgery. Now that Khadija is much older she has decided herself that she does not want to have surgery. She said she does not want to risk dying.