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Girl, 6, born without half her face returns to Russia laughing for first time after surgery in UK

By 0 and 0 and 0
03 October 2019


Getting ready for the surgery, Darina pictured at the Great Ormond Street hospital

When she flew out to Britain for surgery in June, it was hoped that little Darina Shpengler might one day smile.

But when she was reunited with her beloved waiting father Yuri, 49, in at Moscow’s Sheremetyevo airport, the ecstatic girl jumped on him chirping about all the joys and difficulties of her trip to London.

Her mother Elena wept tears of joy as she turned to me and said: 'You see - she has learned to laugh.'

‘You are so beautiful’, said the 49 year old dad. 

Our video shows Darina at the airport as she came to Moscow on her long journey back to her home in Siberia’s Krasnoyarsk region.

Darina and her mother Elena come back to Russia after the surgery

Darina has far to go on her medical journey. She is due back in a few months to world famous Great Ormond Street Hospital for more surgery to construct her upper jaw and lip.

But today we can finally answer the many and regular requests from our loyal readers for an update on this special girl, and happy to say the news is positive. 

It was on 15 August that Professor David Dunaway and Dr Nadeem Saeed made an 11 hour long operation on Darina.

This surgery was the culmination of a six year search by her loving parents for help for a girl who even some of her own family had rejected. 

Even in the minutes after she was born Elena and Yury they were told her condition was ‘hopeless’ due to severe disabilities, and that they should forget about her and leave her in the maternity hospital. 

They refused to allow her to be raised in an anonymous orphanage and gave her all the love they could. 

Finally, after many false starts, our readers were instrumental in raising money that put her on the road to the one place in the world able to carry out the surgery she needed to build her face. 

Ahead of her trip to London, Russian charity Rusfond funded her treatment and expenses to the tune of £67,400 ($83,000). 

Girl, 6, born without half her face returns to Russia smiling and laughing for first time after surgery in UK

Darina pictured in Moscow Domodedovo airport before taking off to London. Picture: Valeria Sukhova

When she arrived in London, aged six, Darina could not speak and weighed little more than 11 kilograms, much the same as a one-year-old child. 

Speaking and eating have been lifelong problems for Darina - so has other kids being ‘scared of her’, and not being allowed to join a kindergarten, leaving her without friends.

En route to Britain, brave mother Elena - who gave up work to care full time for Darina -  told us: 'I want people to stop pointing fingers at her so she doesn’t feel unhappy.”

Might all now start to change after this surgery?

For Elena, 47, there was an excruciating wait during the interminable 11 hour operation.

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

'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.’

Beaming with smiles, professor David Dunaway and doctor Nadeem Saeed look so full of energy it is hard to believe they have just left an operation theatre after almost a day-long surgery

As our exclusive video shows, surgeons David Dunaway and Nadeem Saeed say: ‘We have just finished Darina’s operation. It’s been a very long day, I think we have been operating for almost 11 hours. 

’I think we are very happy with the way things have gone. 

‘We made Darina a nice little jaw, it’s in a good position, and we introduced some more skin into her neck.’

There were some nervous moments for Elena in the immediate aftermath of the surgery, with the child in intensive care.

Since mid-August Darina has been recovering. 

Her mother is full of praise for the Great Ormond Street Hospital, known as one of the finest children’s hospitals in the world.

‘Darina has received an enormous amount of love from all these people who surrounded us these months, and who took care of us,’ said Elena.

‘They didn’t speak a word in Russian, yet they still came even just to give a hug and to express their support. 

‘This had changed our daughter completely, and she learned to laugh.’

Girl, 6, born without half her face returns to Russia smiling and laughing for first time after surgery in UK

Girl, 6, born without half her face returns to Russia smiling and laughing for first time after surgery in UK

Girl, 6, born without half her face returns to Russia smiling and laughing for first time after surgery in UK

Darina with mother Elena in London. Pictures: Elena Shpengler

Interestingly, in-depth tests to find out the cause of Darina's condition did not confirm that was suffering from the Nager syndrome.

Her genetic tests are ‘100% clean’ her mother was told by doctors, meaning ‘all her troubles are based on spontaneous mutations’.

She is plainly unusual in another way.

We were told by a representative of Anglo-Medical UK, a medical concierge service who assisted Darina and her mother in London: ‘The doctors seem to agree that Darina might be the only girl in the world who has so many disabilities AND preserved her intellect.’

Girl, 6, born without half her face returns to Russia smiling and laughing for first time after surgery in UK

Girl, 6, born without half her face returns to Russia smiling and laughing for first time after surgery in UK
Darina pictured immediately after the surgery. Pictures: Elena Shpengler

Next, Darina will need new surgery by Professor Dunaway to correct her upper lip.

This means a new fund-raising attempt which The Siberian Times is joining. 

Earlier it was support from readers that allowed Darina to be examined by surgeons in Moscow for the first time, after her regional doctors in Krasnoyarsk concluded they could not help her.

It was the Moscow surgeons who recommend that the world famous Craniofacial Unit at Great Ormond Street Hospital in London was where she needed to be treated. 

Girl, 6, born without half her face returns to Russia smiling and laughing for first time after surgery in UK

Girl, 6, born without half her face returns to Russia smiling and laughing for first time after surgery in UK

Laughing for the first time in her life, Darina is pictured in Moscow with parents on her way back home to Siberia. Pictures: Valeria Sukhova

We will be announcing a new fundraising campaign for Darina soon to meet the costs of her surgery, but if you wish to support her family now please go to our first GoFundMe campaign.

On behalf of Darina's family, we want to thank you all for the amazing help you provided, for your time, attention, financial support and the kindest messages for Darina and her parents. This means the world for Darina and her family.

Comments (17)

I am a retired pediatric RN and worked at a specialty hospital where kids with unusual genetic disorders came to be seen. Darina is absolutely adorable!! She has loving parents and a great perky spirit. I plan to keep watching about her future surgeries and wish her and her parents the very best.
Lynn Huidekoper, Menlo Park, CA/USA
10/11/2021 14:32
All the very best to all involved...
And some of us think we have tough issues to deal with!..
Go Darina!..
Twilight Zone, Anchorage Alaska
18/10/2021 20:36
I'm delighted to know you were able to smile! I wish all the best and Hope you get even greater achievements
Daniela, Brasil
13/08/2020 12:31
Dear Darina, we were so pleased to see you have had surgery in London. You are such a brave little girl and you have such a beautiful smile to show us all now. We wish you well with your next surgery. From Rose and Darryl
Roseanne Harrison, Australia
17/07/2020 21:21
I'm sorry about this beautiful girl, I hope she will be treated and return to her normal life.
Mohammed, Morocco
26/06/2020 22:34
Please update us on Darina's progress.
RMR, United States
14/06/2020 07:55
she is so beautiful! what a brave little girl
12/06/2020 05:59
OMG! she is so brave to go through such surgery! I hope she is not bullied at school
11/06/2020 18:15
Fantastic girl everytime I see her she melts my heart.

I am so happy she has this oppertunity in life.

Keep upp the fantastic work everybody
Mathias, Sweden
28/04/2020 02:51
I am SO GRATEFUL to everyone who has donated or helped make this happen. This amazing family has inspired us all to put aside our differences and come together in respect, love and generosity to help this deserving child.

They have shown us how great the love of parents for a child can be. Darina has shown us the power of a will to survive. Separately each of us can do only a little but together we can do great things.

But we're NOT DONE YET! Darina needs more surgery. PLEASE DONATE what you can.
Jerry Mosbarger, Rocky Mountains, USA
14/12/2019 12:24
What a mirale for all of you by the good lord... Have a very happy life among your wonder full parents with all the love they can give BRAVO BRAVO BRAVO
William Finol, México
27/11/2019 22:15
quelle prouesse de la part des chirurgiens anglais!!
esperons que cette petite fille pourra vivre normalement très vite!!*
Courage a ses parents aussi!
emaille, avignon france
22/11/2019 03:05
Hugs from the NW USA. Darina may you life be full of love and happiness. What wonderful parents you have!
Philip Jones, United States
17/11/2019 08:47
I wish the best for Darina futur, she deserve it very much. Big hug from Belgium.
Diana, Brussels
27/10/2019 22:40
What an amazing story and such a happy outcome, both for Darina and her parents. Your readers are to be commended for raising the money necessary for this operation and bringing such joy to this family, who never gave up on their lovely daughter
James Cozens, United Kingdom
23/10/2019 16:14

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