Rubi, 18, was diagnosed with neurofibromatosis when she was three years old
Rubi, who lives in a small village in Utter Pradesh, northern India, suffers neurofibromatosis.
She was diagnosed with the rare condition at the age of three, and for 15 years has watched her tumours, which are non-cancerous, grow and grow.
After her mum passed away four years ago, the now 18-year-old is forced to rely on her dad, who buys her clothes and cares for her.
But despite her conditions, Rubi still dreams of marrying and becoming a mother herself one day.
“I have a terrible face,” she said.
“I have dreams like other girls to dress up like a bride and get married but nobody would want to marry this face.”
Rubi started suffering from minor symptoms at three.
Her dad, Lal Muni, 68, and mum Shiv Dulari, 65, started noticing small lumps on her face.
They took her to several doctors but they just prescribed some drugs, which had no effect.
Lal Muni, who is currently unemployed, said: “All the doctors in our area prescribed her with some medicines but her condition just got worse.
I have dreams like other girls to dress up like a bride and get married but nobody would want to marry this face
Rubi
“She was a three-years-old little girl with tumours on her face.
“We started taking her to clinics in different cities but the doctors gave up on her. They said nothing could be done.
“They said we had no choice but to leave her like that.
“We then tried some traditional medicines for more than six months but that did nothing. So then, we had no choice but to accept it.”
As Rubi got older she tried to live a normal life but her tumours gradually got bigger and it became difficult for her to go to school and walk to the market, as more people noticed her condition.
“Nobody in school would sit with me,” she added.
“I was always ignored. I had no friends.
“They all made fun of me and laughed at me. It was very humiliating.”
When Rubi’s mum passed away in 2013 she stopped going school altogether and locked herself away.
Lal, who lost his right arm in work machinery, added: “Her mother was her best friend.
“She was her strength but after her death Rubi struggled very much.
“She was unable to cope up with her situation without her mother. It’s been a difficult time.”
Even though Rubi’s right side of her face has dropped and has skin covering her eye she can still see if she lifts the flap of skin with her fingers.
She added: “I can see from both my eyes but it is just that I have to forcefully keep my right eye open with my fingers.
“I can do anything on my own. I have no problem.
“I can even talk; even though people find it difficult to understand me.”
The teenager said she attracts unwanted attention whenever she leaves her house.
“Some feel pity, while some look shocked,” she said.
“I have to just accept it. But sometimes when I know I cannot take it, I stay at home.
“Who does not want to live a normal life? I cannot even explain the feeling I get when I see myself in the mirror.
“I only wish to be normal like others.”
Dr Jaswan Shakya, a medical director and surgeon, at Sushma Koirala Memorial Hospital, in Kathmandu, who has operated on many neurofibromatosis patients, said: “The girl appears to be suffering from a multi-system genetic disorder which develops tumor of the nervous system.
“People can live a normal life with just day to day difficulties. It is usually not painful but it causes difficulty in eating, drinking and speaking.
“The only treatment is surgery to reduce the size of tumour, but the condition means the tumours will re-grow after a few years.”
Rubi added: “If I ever get treatment I would go out to the market and shop for myself.
“I have not shopped for myself in years. It’s always my father who has shopped for me and I would like to do it myself again one day.”
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