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Girl born without half her face begins treatment so she can smile for first time

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A brave Russian girl born without half her face is set to undergo pioneering medical treatment in London in the hope that one day she can finally smile.

Tragic Darina Shpengler, aged six, has a rare condition that means she has no lips or chin, cannot speak and weighs just 25lbs.

When she was born doctors suggested that her parents give up on her and put her in an orphanage – they refused – and she was shunned by extended family members.

Other children are “scared” of the girl due to her appearance, and she was not allowed to join a kindergarten back home in Siberia.

Her mother Elena, 47, refused to hide Darina away even though most of her family and friends cruelly “disowned” the girl, forcing her loving parents to move away from their home village.

Six-year-old Darina Shpengler and her mother Elena, 47

 

Soon after her daughter was born, Elena also rejected advice from maternity hospital doctors to quietly give up and forget about the child who would then disappear into Russia’s grim orphanage system

Elena’s long battle to help her daughter today reaches its climax as she begins potentially life-changing treatment at Great Ormond Street Hospital for Children.

Russian specialists admitted they do not have the expertise to treat the girl and recommended instead the London hospital’s Craniofacial Unit as the best place in the world to help Darina.

This week she flew in via Moscow from Krasnoyarsk deep in Siberia.

Darina is now under the care of the unit’s head Professor David Dunaway after a major Russian charity Rusfond funded her treatment and expenses to the tune of £67,400.

Darina has been flown to London for potentially life-changing surgery

Elena dreams that not only will Darina’s face be repaired but that she will be able to eat properly, speak – and smile.

“I cannot say how much I am waiting to hear her voice, to hear her saying ‘Mama’. This will be the best melody in the world, to hear her speak,” the emotional mother told The Siberian Times.

“My every thought and hope is for the surgery to go well, because it would mean that Darina would be able to eat, and she’ll start gaining weight.

“She will start breathing better and hopefully will grow up, and won’t get sick as often as she does now.

“She will start playing with other children because they won’t be scared of her.”

Though aged six, Darina currently weighs just 25lbs – the same as many children aged one.

Darina has been flown to London for potentially life-changing surgery

In Russia the girl has had no final diagnosis but she is suspected to suffer from debilitating Nager syndrome.

While Darina cannot speak she senses that she is shunned by potential friends, as well as adults.

“I want people to stop pointing fingers at her so she doesn’t feel unhappy,” said Elena, who gave up work to care for her child full-time.

“Darina is now old enough to understand everything.”

She said: “Darina cannot express her feelings with words, but I can see that just like me she is excited to see the doctor (Prof Dunaway).

“Like any mother of a child with such a long illness history I am nervous of what tomorrow brings, but also I am incredibly grateful to everyone who helped us get this far.

“I never thought it would be possible to see an expert of the level of Professor Dunaway, and I firmly believe in the surgery’s success.”


Recalling the hardships they have been through, Elena said: “Darina does not have lips. Her mouth is constantly open and all the time in blood.

“Only my sister supported me. All other relatives just stopped any communication with us.

“My brothers, their children, my husband’s mother – nobody wanted to accept Darina.”

Three years ago in an interview she explained her philosophy but also the agony she has faced.

She said: “We do not hide Darina from people. “We take her everywhere with us.

“Can you imagine, we go into the shop, see our own relatives, and they immediately go out, asking their children not to look at us?”

Worse, she said, their relatives even informed police she and her husband Yury – now 49 – had damaged Darina’s mouth themselves.


She added: “I got a call from the police. They demanded explanations. Our surgeons were shocked to hear all this.

“And we need all our powers to help Darina. We need to raise and support her, she has a lot to overcome.”

One of her Russian surgeons, Orest Topolnitsky, who previously operated on Darina, said: “We know that this family has problems with relatives who have not loved this girl from the very beginning.

“Some people have no hearts, it is so shocking.”

Elena said that when she gave birth the medical staff initially refused to show her the child.

She recalled: “I begged them to to show me my daughter. The nurse looked at me and asked – ‘Are you ready to see it? She is in an incubator’.

“I went close and looked – and saw this wide open mouth. I fell into darkness – and lost consciousness.

“I was taken to intensive care where the doctors suggested I leave the baby in the hospital. But I strongly refused.”

Great Ormond Street Hospital
Darina is beginning treatment at Great Ormond Street Hospital for Children

Yury, her husband, was recovering from a car crash in another hospital. When he finally saw the baby he was adamant.

“His face did not change when he saw Darina,” she said.

He told his wife: “She is ours, our girl.”

“The truth is this trouble has only brought us together,” she said.

“It is so horrible when you see a crippled and crying baby and you are unable to help.

“Darina was crying day and night, and I was crying too. I understood that she was in pain.”

Elena added: “People told us to put a mask on her but (my husband) replied: ‘If you don’t want, don’t look at her – but we accept her the way she is’.

“Darina was not allowed to join a kindergarten. We were told that the other children would be scared.

“Instead, social services sent two teachers to come to Darina once a week. She is such a sociable girl.

“We have bought lots of toys for her but nothing can replace friends.”

Darina likes to sing – making melodies even though she cannot pronounce words.

“She loves to put on clothes and look at herself in the mirror,” her mother added.

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