In Photos: Two Delhi Boys Are Battling A Rare Disorder That Makes Them Look ‘Foreign’

Posted on June 9, 2016 in Society, Staff Picks

By Swati Verma:

It was in the winter of 2005 that I first saw Suraj. With his almost translucent skin, hair as white as freshly fallen snow and a curious absence of colour from his skin; it was hard to believe he wasn’t a doll. That day in the hands of a visibly ‘dark’ vegetable vendor we had grown up calling “Virender Uncle”, I saw him; an albino baby. He had come over to seek medical help in our colony meant for government doctors.

The case of albinism in India is a curious one. In a country obsessed with fair skin we see an inapposite reaction to people with this condition. Albinism is an extremely rare condition with about 100 thousand to 200 thousand such cases in India. It often renders such individuals hypersensitive to sun rays besides making their appearance look ‘foreign’.

Albinism in humans (from the Latin albus, ‘white’) is a congenital disorder characterised by the complete or partial absence of pigment in the skin, hair and eyes due to absence or defect of tyrosinase, a copper-containing enzyme involved in the production of melanin.

Due to their ethereal appearance, people with albinism have been mistreated for centuries. They’ve been perceived as mythical beings in countries like Tanzania, and witch-doctors have murdered them for their body parts, believing them to have magical properties. There have also been cases of albino women being raped in Zimbabwe, because of a false theory that sex with them can cure a man of HIV.

‘Children of the Moon’ is a story of two albinos. Faizan and Suraj are inadvertently similar to each other in appearance but there are miles of difference in their condition; both physically and psychologically.

Faizan comes from a business family living in Delhi’s Sadar Bazaar with seven brothers and his parents. Currently studying in Jamia University to become a physiotherapist; he has a really outgoing personality.

He does not fit the stereotypical image of an albino at all, if at all there is one. Faizan is the class representative of his batch and is surrounded by people perpetually. The ability to understand his body and the timely intervention of his parents has helped him tremendously to reach where he is today – the first person of his family to take up higher studies.

However, Faizan is an exception in a sea of albino kids born to relatively poor families. With no dedicated NGO’s to help families and members of albinos in the national capital region itself, one can only imagine the condition in the other parts of the country. Quite a few times the obvious difference in appearance alienates the albino kid from the family and the community. In cases where the causes of albinism are unknown, there are cases of people giving in to superstition and myths to find a ‘cure’ for something that is purely a genetic trait – and not a disease.

Suraj (11) is a son of a vegetable vendor living near Azadpur, Delhi. An uncannily shy boy for his age, Suraj often stays indoors in his two storey home.

Suraj (11) is a son of a vegetable vendor living near Azadpur, Delhi. An uncannily shy boy for his age, Suraj often stays indoors in his two storey home.

Suraj watching 'Doraemon' post lunch with his brothers as his mother engages herself with household chores.

Suraj watching ‘Doraemon’ post lunch with his brothers as his mother engages herself with household chores.

"Time spent away from home in hostels has perhaps toughened me." Faizan (22) remains unfazed by the stares he encounters on his way to his home on the busy Sadar Bazaar lanes of Old Delhi.

“Time spent away from home in hostels has perhaps toughened me.” Faizan (22) remains unfazed by the stares he encounters on his way to his home on the busy Sadar Bazaar lanes of Old Delhi.

Suraj is extremely sensitive to sunlight. In an ironic twist of fate he was named after the very thing which has the potential to give him skin cancer - the Sun.

Suraj is extremely sensitive to sunlight. In an ironic twist of fate he was named after the very thing which has the potential to give him skin cancer – the Sun.

"Once I was at this monument and the security guard insisted that I pay a foreigner's entry fee. Even my ID card couldn't get him to believe me."

“Once I was at this monument and the security guard insisted that I pay a foreigner’s entry fee. Even my ID card couldn’t get him to believe me.”

"I do not like wearing glasses," Suraj's bloodshot red pupils are indicative of the severe damage they have suffered due to lack of proper care. The red colour is due the blood clots.

I do not like wearing glasses,” Suraj’s bloodshot red pupils are indicative of the severe damage they have suffered due to lack of proper care. The red colour is due the blood clots.

"We have accepted him as God's gift. I do not know why he looks like that," says Suraj's mother. Lack of knowledge has led people to fall for superstitions rather than undergoing treatment and taking preventive measures.

“We have accepted him as God’s gift. I do not know why he looks like that,” says Suraj’s mother. Lack of knowledge has led people to fall for superstitions rather than undergoing treatment and taking preventive measures.

"My studies in biological science have definitely helped me understand my condition better." Faizan is currently studying at Jamia University to become a physiotherapist.

“My studies in biological science have definitely helped me understand my condition better.” Faizan is currently studying at Jamia University to become a physiotherapist.

"There is no one who looks like me here." The lack of communication about his condition has left him isolated and unwilling to venture anywhere else but school.

“There is no one who looks like me here.” The lack of communication about his condition has left him isolated and unwilling to venture anywhere else but school.

"We met at Aligarh where we were the only two guys in our class. We had no option but to be friends," teases Subhan. Both of them are pursuing the same course at Jamia now and their friendship has only grown deeper.

“We met at Aligarh where we were the only two guys in our class. We had no option but to be friends,” teases Subhan. Both of them are pursuing the same course at Jamia now and their friendship has only grown deeper.

"I want to be a doctor when I grow up. Or a photographer like you. Or I'll just draw." Tucked away from the Sun as if almost instinctively, Suraj shows off his painting skills.

“I want to be a doctor when I grow up. Or a photographer like you. Or I’ll just draw.” Tucked away from the Sun as if almost instinctively, Suraj shows off his painting skills.

"My parents are first cousins. Albinism being a recessive trait, gets magnified if the parents are closely related. Even my 'Nani' was an albino." Faizan at home with his one-year-old niece as his mother and friend Subhan look on.

“My parents are first cousins. Albinism being a recessive trait, gets magnified if the parents are closely related. Even my ‘Nani’ was an albino.” Faizan at home with his one-year-old niece as his mother and friend Subhan look on.

"People with albinism need special care for their eyesight. His grandmother was an albino so you can say we had learnt something from that experience. I have always been regular in taking Faizan to an eye doctor," says Faizan's father. Faizan credits his 6/24 vision to his father which has left the doctors speechless.

“People with albinism need special care for their eyesight. His grandmother was an albino so you can say we had learnt something from that experience. I have always been regular in taking Faizan to an eye doctor,” says Faizan’s father. Faizan credits his 6/24 vision to his father which has left the doctors speechless.

"Being an albino is not to be diseased. It's just a recessive gene. Quite honestly, I'd be accepted as completely normal in the European countries!"

“Being an albino is not to be diseased. It’s just a recessive gene. Quite honestly, I’d be accepted as completely normal in the European countries!”

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