A Russian girl without lips or chin flew to London for a groundbreaking treatment to rebuild her face.
Darina Shpengler has never been officially diagnosed, but it is thought of a rare condition called Nager's syndrome.
Once she was born, doctors reportedly advised her mother Elena Shpengler, 47, to & # 39; leave her baby & # 39; to become an orphan.
Mrs. Shpengler and her husband Yury, 49, left the remote village they had called home when their family cruelly rejected Darina.
Because Russian doctors can't help, the six-year-old today has to undergo life-changing operations at the Great Ormond Street Hospital.
Mrs. Shpengler hopes that the procedure will allow her daughter to eat and arrive.
But above all, the mother hopes that the operation will give her a stupid daughter a voice, which she believes is the & # 39; best harmony & # 39; will be.
Darina Shpengler was born without lips or a chin in what is thought to be a rare condition called Nager syndrome. The six-year-old is pictured at an airport in her native Siberia and is preparing to fly to London for surgery to rebuild her face at Great Ormond Street Hospital
Darina, who weighs the same as one year old, is depicted with her mother Elena Shpengler. Surgeon Professor Dunaway will supervise her treatment (pictured right)
Speaking of her daughter's upcoming surgery, Mrs. Shpengler said The Siberian Times: & # 39; My every thought and hope is that the operation is going well because it would mean that Darina could eat and that she was starting to arrive.
& # 39; She will breathe better and hopefully grow up, and will not get sick as often as now.
& # 39; She is going to play with other children because they are not afraid of her. & # 39;
But above all, Mrs. Shpengler, who lives with her family in the Krasnoyarsk region, is delighted to hear Darina talk.
& # 39; I cannot say how much I am waiting to hear her voice, hear her say & # 39; mom & # 39;, & # 39; she said. & # 39; This is going to be the best melody in the world, to hear her talk. & # 39;
Although she is excited about her daughter's surgery, Mrs. Shpengler also has some reservations.
She said yesterday: & # 39; Like every mother of a child with such a long history of illness, I am nervous about what tomorrow brings.
& # 39; But I am also incredibly grateful to everyone who helped us get this far. & # 39;
Darina is taken care of by professor David Dunaway, head of the craniofacial unit on Great Ormond Street.
The treatment of the younger is expected to cost £ 67,400 ($ 85,390) and is funded by Rusrical, a Russian charity.
Despite the fact that she feels worried, Mrs. Shpengler, who takes care of Darina full time, is determined to stay positive.
& # 39; I never thought it would be possible to see an expert at Professor Dunaway's level and I firmly believe in the success of the operation, & # 39; she said.
& # 39; We need all our strengths to help Darina. We have to educate and support her, she has a lot to overcome. & # 39;
Darina (pictured at the airport) bleeds from the mouth & # 39; constant & # 39; and struggles to eat, making it difficult for her to arrive. She can't talk either. Her mother hopes that the operation will give the young person a voice, which she believes is the & # 39; best harmony & # 39; will be
Mrs. Shpengler (pictured with Darina at the airport) claims that doctors initially told her to & # 39; forget & # 39; and make her orphan. Because she refused to give up her baby, Mrs. Shpengler took Darina home just to be avoided by almost all of their family, who refused to accept her
Darina (pictured with her older brother Alexei) is loved by her brothers and sisters but is cruelly confronted with looks from strangers pointing and even asking her parents to place a mask over her face
Darina (pictured with Alexei) is unable to speak, but is still aware of how people react to her
WHAT IS NAGER SYNDROME?
Nager syndrome is a congenital disorder that affects the bones and tissues in the face.
More than 100 cases have been reported, according to the National Organization for Rare Diseases.
Nager syndrome is thought to occur due to problems in early pregnancy when the cheekbones, eye sockets, and jaw develop.
This causes the characteristics oblique eyes and small jaws.
Some patients have also affected the arms, hands, legs and feet.
And their ears may be missing or very small.
Doctors suspect that Nager's syndrome is a genetic disorder caused by a mutation on a specific gene.
However, this gene has not been identified.
If the jaw is severely underdeveloped, breathing and feeding can be difficult.
Some patients also have hearing problems and stiff limbs.
Primary syndrome is usually treated through surgery, including craniofacial and cosmetic operations.
Stabilizing a child's breathing is the first step, with some requiring an opening in the windpipe.
Later in childhood, patients may have bone grafts to rebuild their jaws, as well as ear reconstruction.
Source: Great Ormond Street Hospital
After Darina was born, Mrs. Shpengler claims that medical staff initially refused to show her her newborn daughter.
& # 39; I begged them to show it to me, & # 39; she said.
& # 39; The nurse looked at me and asked, "Are you ready to see it?"
Mrs. Shpengler went to the incubator where Darina was and saw her daughter's deformity for the first time.
& # 39; I fell into the darkness and lost consciousness &, "she said.
& # 39; I was taken to intensive care, where the doctors suggested leaving the baby in the hospital. But I strongly refused. & # 39;
Despite Mrs. Shpengler's dramatic reaction, her husband, who was recovering from a car accident at another hospital, was not appalled.
& # 39; His face did not change when he saw Darina, & # 39; said Mrs. Shpengler.
Shpengler reportedly told his wife: & # 39; She is ours, our girl. & # 39;
After overcoming her first shock, Mrs. Shpengler spent the night trying to comfort the newborn, who was crying in pain and bleeding from her mouth.
& # 39; It's so awful when you see a crippled and crying baby and you are unable to help, & # 39; said Mrs. Shpengler.
& # 39; Darina cried day and night and I cried too.
& # 39; I understood that she was in pain. Her mouth is constantly open and constantly in the blood. & # 39;
While the new parents managed to pull themselves together, almost all of their relatives avoided the newborn immediately.
Mrs. Shpengler fainted when she saw her daughter for the first time. Darina & # 39; s father Yury (photo), however, was unaffected. He even confronts strangers staring with the words & # 39; we accept her & # 39;
Darina & # 39; s mouth even led some family members to become suspicious; her parents had intentionally hurt her. Not long after she was born, her mother received a call from the police's demanding answers.
Darina plays with her brother, but her parents are worried & # 39; nothing can replace friends & # 39;
The young person is said to be aware of the treatment and is eager to get started
& # 39; Only my sister supported me & # 39 ;, said Mrs. Shpengler. & # 39; All other family members have just stopped communicating with us.
& # 39; My brothers, their children, my husband's mother – nobody wanted to accept Darina. & # 39;
As if rejected by their relatives was not bad enough, the so-called parents' loved ones even accused them of damaging Darina & # 39; s mouth itself.
& # 39; I received a phone call from the police, & # 39; said Mrs. Shpengler. & # 39; They demanded explanation.
Despite all she has passed, Mrs. Shpengler claims that Darina is a happy, & # 39; social girl & # 39; is
Darina & # 39; s parents refuse to be ashamed of her and take her everywhere
Darina & # 39; even sings & # 39; and sings melodies, even though she cannot pronounce words
Darina, who is reportedly weighing only 25 lbs, cannot speak, but is still aware of how other people respond to her.
& # 39; I want people to stop pointing her fingers at her so she doesn't feel unhappy, & # 39; said Mrs. Shpengler. & # 39; Darina is now old enough to understand everything.
& # 39; Can you imagine, we go to the store, see our own family members, and they immediately go outside and ask their children not to look at us?
& # 39; Darina cannot express her feelings in words, but I see that she is excited to go to the doctor like me. & # 39;
Despite the audience's reaction to her daughter, Mrs. Shpengler refuses to hide Darina.
She spoke in an interview three years ago and said: & We don't hide Darina from people. We take her everywhere we go.
& # 39; My husband Yury is not ashamed either. He takes Darina everywhere he goes.
& # 39; People (have) told us to put a mask on her, but he said, "If you don't want, don't look at her – but we'll accept her as she is". & # 39;
Surgeon Orest Topolnitsky, who operated on Darina in Russia, added: & We know that this family has problems with family members who have not loved this girl from the beginning.
& # 39; Some people don't have a heart, it's so shocking. & # 39;
Darina is banned from the nursery because of the fear that her appearance will upset the other children. Depicted with her parents and brother, a teacher comes to their house twice a week
Darina & # 39; s parents have her & # 39; many toys & # 39; bought but wish she could make friends
Ms. Shpengler even claims that Darina was banned from the day care center because she feared that her appearance would shock other children.
& # 39; We were told that the other children would be scared, & # 39; she said. & # 39; Instead, social services sent two teachers to Darina once a week. & # 39;
Despite everything she has endured, Mrs. Shpengler claims that Darina is a happy little girl.
& # 39; She is such a & # 39; n social girl, & # 39; she said. & # 39; We have bought many toys for her, but nothing can replace friends. & # 39;
Darina & # 39; even sings & # 39; and sings melodies but cannot pronounce words. & # 39; She likes to put on clothes and look at herself in the mirror, & # 39; Mrs. Shpengler added.
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