Eight-year Nariani Ivanova’s white hair and eyebrows, but the genotype of person Asian.
Unusual all — magic blue eyes framed by white eyelashes.
In another light, the eyes appear purple. If the girl is tired, they become red. Then they have to screw up.
“Nariani eyes can not tolerate bright light,” says her mother Lena Ivanova.
She draws the curtains. A wooden hut located in the Yakut village Textur, immersed in twilight.
Mariana loves to perform. She wants to show the readers of Helsingin Sanomat as she dances.
Mariana starts to pose, looking directly at the camera and habitually puts his hand under his chin — as do professional models.
Mariana begins to dance on the wooden floor, still looking at the camera. She dances to the music of the British hit You Don’t Know Me. In the clip of a song also dancing little blond girl, but the girl dancing in a log hut, unique.
A few weeks ago, eye-catching face Nariana became known to millions of people.
At the beginning of April Nariana was the most ordinary country girl from Siberia. Besides dancing, Nariana like to watch the cartoon My Little Pony, run around outside and play with friends. And — to video blog.
Since this all started.
Nariana created with the mom account on Instagram, where they posted videos and pictures of girls. The account was closed until Nariana persuaded the Pope to make it open.
The photos immediately became popular in Yakutia. The family contacted working in Yakutia photographer Vadim Rufov and offered cooperation.
So there was a series of Studio photos Nariani, including the image of the snow Maiden.
The rufov posted these photos on his account on Instagram, and the next day they became a hit on the social networks. Initially in Yakutia and later in Russia and, eventually, worldwide. In Finland photos Nariana became popular after appearing on the website Bored Panda.
“Siberian Snow: 8-year-old girl. stunning blond hair and porcelain skin — from offers modeling agencies no end,” wrote the British Daily Mail newspaper, perhaps forgetting that snow white’s hair was black as ebony.
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Nariana is not the only child whose exceptional light color this spring drew worldwide attention. In April photos 11-year-old twins Lara and Mara Bavar (Lara, Mara Bawar) from Brazil spread all over the world. In some pictures they are posing together with his dark-skinned older sister.
Unusual appearance Nariani, Lara and Mara and hypersensitivity to light associated with albinism.
Albinism is rare. On average one person for 17 thousand inhabitants of the planet.
The most unusual person I’ve seen with my own eyes. Girl of Sakha. Her name is Mariana @lenevalena. She’s an albino. She is incredibly artistic and as much as 2 hours posing for the camera. From the first seconds began to chat like old friends. Her eyes are afraid of bright light. In spite of this turned out great photos which I enjoy? not to clog the ribbon will slightly spread. Thank you to your parents and you Mariana, I hope to see you?I was very glad to meet you? Thank you for the dress @prokat_only_you_ykt, for the gorgeous flowers @agency777weddingykt and for the Studio @nikola_foto #acutance #nariana #albino #beauty
In Finland, albinism has been observed in 200 people. In Africa, albinism is most common in areas South of the Sahara.
Albinism cannot be diagnosed only on a light skin color. First and foremost, albinism affects vision, and the albino in the first place said this is the problem.
Associated with albinism blurred vision are different. Almost all albino the clear vision area underdeveloped, many observed photophobia. Albinism may be accompanied by strabismus and nystagmus (rapid involuntary movement of the eyeballs).
Of albinism there are two main types: ocular albinism affects mainly the eyes, glutaconyl albinism affects both the skin and eyes. Lighter skin color is due to low melanin production, or its absence. Melanin — the pigment which determines the color of skin, eyes and hair of a man.
Albinism is genetic in origin. It may be inherited, if the father and mother of the child has the gene that causes albinism.
How albinism will affect the life of a child depends on where he was born. This really depends on many things. Somewhere albinism admire, but somewhere it is dangerous to life.
21-year-old of Kiviranta Aino (Aino Kiviranta) from Kouvola and 41-year-old mayuri Minna (Minna Majuri) of Espoo member of the Board of the Finnish society of albinism. The society have appeared recently. Before its creation none of the women have not met other people with albinism.
“Us, probably, it was not difficult to find out?” asks mayuri during the interview.
In some ways, like that. Women bright, but there is nothing exceptional. Hair Kiviranta painted in a shade of red.
None of them want to be called albino.
“Albino sounds as if you define only the color,” says mayuri.
But it’s not. Albinism is just one of the features, and in Finland still and unobtrusive.
Mayuri, as an adult, met with prejudices or a bad attitude, but this is due to the fact that in Finland and so many blondes. The streets are the people who do not have albinism, but they have lighter skin and hair.
“We are in a privileged position. We were in this ethnic group, which has skin that is pale and exudes its light color,” says mayuri.
The effect of albinism on human life depends on others. How approvingly they look at you and how they behave towards you.
Mayuri saw the pictures Nariani Ivanova. They pleased her. In her youth, she was rarely seen photos of other people with albinism. If she saw them, it was medical photos in which the main focus was on the symptoms of albinism.
The two oceans. From the beginning I had no desire to photograph her in the children’s way. Let baby photographers photographing? surprisingly she understood me immediately and we made a lot of beautiful photos. @lenevalena unique child. There are very few. It was a little hard, as her eyes very sensitive to light. But she is great, did everything as it should be✊? #acutance #nariana #albino #beautiful
Based on the photos of mayuri concluded that the family take albinism Nariani. The girl looks happy.
So. When Mariana was born, her bright color was for parents a surprise, because none of them don’t have albinism. Parents, brothers and sisters and all known relatives and ancestors of the Yakuts with dark hair.
Parents still know what is albinism, and was excited about the unusual girl. They gave her the Yakut name “Mariana”, which means “gentle”.
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“Zeru Zeru”. So called people with albinism in Swahili. It means “not man.”
When an employee of the Finnish missionary organization Suomen Lähetysseura Pyhtila Pia (Pia Pyhtilä) met with local religious leaders, she first had to teach them the word “albino”. It was unfamiliar to them. Then Pyhtila explained that to say “zeru zeru” — not good.
“This can be compared to as before in Finland all black people were called “Negroes”.
Pyhtila said that in some areas of Tanzania albino as a warning sign.
“In Finland must be born blue or green to the same effect”.
Pyhtila know many people who were led to believe that an albino cannot see, and that they should be avoided.
In Finland, a have been discriminated against dark-skinned people. But the fate of albinos in Tanzania and other African countries may be even more sad.
Albinism in Tanzania, especially in rural areas, can lead to death. Albinos are killed because their body parts are considered talismans that bring happiness and money. A lot of pay for them.
Finnish missionary organization Suomen Lähetysseura holds in Tanzania working to end the persecution of albinos. The organization disseminates information about albinism and provides shelter to those who had to flee from home.
According to Pyhtila in the big cities is enough to be careful. She recently met the local priest, an albino. He calmly walks the streets by day, but at night, afraid to walk and not sit in a taxi with a strange driver.
In rural areas many have to leave their villages, because it is very high risk of being stolen. Some every day to change the place overnight. Many families are ashamed of their children with albinism.
“Here albinos are accustomed to give way to fear. They are very timid and all the while cautiously look around, which adds to their strangeness in the eyes of the people. Anyone behaves like this, if you pursue”.
Pyhtila says that the Western people might wonder why the issue of harassment cannot be resolved. Why just not to say: stop, you’re doing it wrong?
It is not so simple.
“I don’t know how we in the Western countries willing to realize that here we are talking about religion. People really believe in it, and from faith it is impossible to refuse, even with training.”
So the local leaders want the Church conducted its work on the protection of albinos. The person should be given something new to replace the old beliefs. Something that is safer for other people.
Still at a meeting with local Pyhtila emphasizes that the Church is one in its faith, does not pay. Church Ministers just explain, what is albinism, and that albinos are people, and killing people is wrong.
When this month Pyhtila going to the city of Shinyanga, where the government opened a shelter for albinos, it will show the pictures of Nariani.
“I want to show that you too can be. That someone can admire the fact that she was albino”.
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Leather Pickett-Miller (Pickett-Miller) from the United States brown. The same color skin as her husband and daughter. But the skin and hair of her five year old son — bright. Albinism son came as a surprise to parents. They knew that in their family has the gene that causes albinism.
Before the birth of his son, Pickett-Miller never used sunscreen. For my son we have to learn new things.
“I remember standing in the store and thought, what between all these creams difference.”
When my son was born, Pickett, Miller did what would every mother. She went looking for information on the Internet.
“I read about albinism all that found,” says Picket-Miller on the phone from Alabama, where she lives.
Picket-Miller studied medicine, and had access to various medical sources. She found plenty of medical information about albinism, but that was looking for an answer, not found.
“He expects a black woman with a white son?”
Since there was no answer, Picket-Miller decided to answer these questions. At the University of southern Mississippi, she defended her dissertation, which focuses on consciousness albino.
Pickett-Miller and her family are well-known in his hometown. Therefore, they do not have too much to explain why the son is not similar to parents.
“I don’t always want to explain it, although many people wish me well. Just curious, because a son is something that they haven’t seen.”
Some are asking for the hair and skin of the boy with caution. Others say the first thing that comes to mind. The family tries to reply with humor: it relieves stress.
The boy they said he can explain the curious, what is the albinism, but he doesn’t have to do this. Parents never talk about its features negatively. They say that in all people there is something unusual and all have their difficulties, but they are not always visible.
“We say that his problems are just noticeable stronger than the problems of most people.”
Alabama is one of the southern States of the USA. In the 1960-ies of the racial laws divided people according to skin color in schools, trams, married.
Still there’s no more danger of the use of force against African-American men than others. Although my son is five years old, Pickett-Miller is concerned about its future.
“How to talk about the dangers of violence the boy from which will grow a black man with white skin?”
In the United States, the word “race” is used during the census. But what is race? If it is the color of the skin, then the son of the Picket-Miller — white?
Albinism reveals how artificially divide by skin color.
But although this division is artificial, don’t get rid of. It affects life and consciousness. Pickett-Miller would like to have her son thought the same as his parents: I’m a black American and proud of it. But she knows that the son may act differently. If the boy decides to shear off his white African-American hair, it can hide their race. This is the privilege that his mom no.
Although albinism is rare, it emphasizes the culture and society aspects, which apply to all. Researcher of visual culture Leena Maya Rossi (Leena-Maija Rossi) from the University of Helsinki says that albinism is an example of how racial issues are beyond the scope of the confrontation of black and white.
“White people all the time, too klassificeret on the basis of race, but not as black. White has a lot of benefits.”
Here she is delicate like a flower
Here she is delicate like a flower
This means that if a person is considered white, his life in Western countries is easier than if he was considered black. If the son Pickett-Miller in adulthood “turns white”, his life is likely to be safer. White leather will protect it.
Rossi is thinking that the amazement that cause model with albinism, caused by admiration of their extraordinary whiteness. In albinos embodied the whitest white possible. In fact, the skin of white people, beige, pinkish or brown. White color is symbolic.
Admire in the same way very black skin people wouldn’t, because black people in our culture are in a subordinate position relative to whites. It would be considered racism.
Rossi, Pickett-Miller remind you that the division race has no biological basis. It is an invention of people, and it is used to preserve the hierarchy.
“Albinism destroys fantasies about race,” says Pickett-Miller.
“When my son was born, I was upset that he did not look the way I pictured it. Only then I was ready to move on.”
In her opinion, society also need to go through it: to get over the fantasy that people should be divided by race.
The albinism attribute traits, which in reality does not exist. In popular culture there are cool villains albino like a hero Silas in the book and film “the da Vinci Code”. In real life, albinism would make it difficult to drive a car, and shots were given so well.
“That’s nonsense. And the whole book, in General, is nonsense,” — said a member of the Finnish society of albinism mine mayuri.
She was wondering if about people with albinism told more. Whether they are Brazilian twins or the little girl from Siberia. Or Princess Elsa from the cartoon “the Cold heart”.
“Nobody said that Elsa has albinism, but it is so clear. Compare it at least with my sister Anna,” says mayuri and laughs.
Aino of Kiviranta nearby says that albinism too romanticise it.
“Albinos look in the pictures as pretty bright, pretty and cute,” she says.
It is not at all comforting. After all, she has to stop each bus approaching the bus stop, because she can see it only up close.
Such domestic problems have Nariani from Siberia. Her skin is so light, and her eyes are so sensitive that she can’t be in the sun without protection. The window the Sunny side of the house all the time shuttered.
On the street Nariana wear sunglasses. Walking is best in the evening when daylight is not so scorching.
“Rufov takes Mariano without the bright lights,” the praises of Mama Lena family photographer.
According to Rugova, Marianas easy to work with, they quickly became good friends. During filming, not use direct light and made long breaks.
“I hear from advertising and modeling Agency”.
The girl has already filmed four television channels. We are talking even about the role in the movie. The rufov took pictures Nariani to advertise the products of Yakut jewellery companies “EPL diamond”. Mariano stopped on the streets in Yakutia and asked to do with her selfie.
Russian model Agency would like to work with a girl, but parents still treat it with suspicion.
“She will study in the same school. She has the same friends here in the village as before,” says mother Lena.
“Nariana should not be deprived of childhood.”