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'The 3am stop at a remote station miles from home is a moment you will remember for the rest of your life.'
Jon Pearson (Telegraph Online)

Excitement, fear and passionate hope for new life as brave Darina, 6, travels to London

25 June 2019

Born without lips and chin, disowned by her family, she is to see one of Britain’s top surgeons in the hope that she can finally smile.

When Darina was born as a late child, Elena admits she suffered an unbearable shock following a smooth pregnancy that suddenly resulted in a birth at 7 months. Picture: Valeria Sukhova

The Siberian Times met Darina and her mother Elena at the Moscow Domodedovo airport as the pair was nervously waiting for their flight to London. 

This will be the first trip abroad for Darina, who was born in the village of Gromadsk in Siberia’s Krasnoyarsk region. 

Six years ago her long-awaited arrival brought a lot of joy and pain into a loving family of Elena and Yuri Shpengler. 

The girl was born with only half a face. 

Darina’s trip and medical bills in the UK are covered by RusFond, one of Russia’s largest charity foundation.

The Siberian Times keep its GoFundMe campaign running for those of you who wishes to support Darina and her family.

For Russian donors, Darina’s mother Sberbank card number is 5484 3100 1026 0112. 

Darina on her way to UK


Darina on her way


Darina on her way to UK


Darina on her way to UK

This will be the first trip abroad for Darina, who was born in the village of Gromadsk in Siberia’s Krasnoyarsk region. Pictures: Valeria Sukhova

Darina’s chin and lips were missing - a condition preliminarily diagnosed as  Nager Syndrome, although even now there is no final diagnosis - and none of the Siberian doctors that assisted at her birth knew how to help the baby. 

The couple was sent back home where they were met with resentment from other family members, who couldn’t cope with Darina’s unusual appearance. 

The parents were left alone with the rest of her family cutting their communication. 

Darina arrived in UK

Darina's first picture in the UK by Elena Shpengler

Elena gave up her job to look after Darina, and with Yuri she fought a long and often very hard campaign for their daughter’s chance to receive appropriate medical help. 

‘I can’t 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’, said emotional Elena as she was preparing to board the flight to the UK. 

Eena and Darina


Eena and Darina


Elena and Darina

‘I can’t say how much I am waiting to hear her voice, to hear her saying ‘Mama’. Pictures: Valeria Sukhova

‘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.’ 

The Shpengler family went through years of treatment attempts in Siberia and Moscow, and endless consultations with top Russian medics. 

Their final word last year was that for a life-changing surgery Darina needed to gain over 13 kilograms of weight - a condition which she has been failing to meet due to problems with eating and illnesses. 

Her weight is currently 11.3 kilograms - akin to child aged one year even though she is now six.

Darina in UK visa centre


Shpengler family applying on UK visa

Darina and her parents pictured in Novosibirsk, while applying for UK visa. Pictures: The Siberian Times

The Siberian Times ran a story about Darina and received an overwhelming response from all over the world, which inspired us to start a fundraising campaign to help the family.  

Thanks to your support we were able to get Darina to Moscow, and found Russian experts who thoroughly studied the opportunities for Darina’s surgery in her own country.

They concluded that due to low weight she had to be operated abroad, and suggested one of the world most renowned craniofacial surgeons professor David Dunaway, head of the world famous Craniofacial Unit at Great Ormond Street Hospital for Children in London.

Dr David Dunway

Preliminary agreement to operate on Darina was received, but the surgical bill came to approximately £67,400 ($86,000) - which seemed far beyond reach.

But thankfully Darina’s story of her struggle to smile and live normally was chosen by one of Russia’s largest charity funds called RusFond which helped to gather the whole amount.

Darina is to see Dr Dunaway tomorrow, 26 June, for her first medical check up. 

‘Darina cannot express her feelings with words, but I can see that just like me she is excited to see the doctor’, said Elena, as she left for London. 

Fighting stigma: parents of girl born with half a face tell of their battle to help her


Fighting stigma: parents of girl born with half a face tell of their battle to help her


Fighting stigma: parents of girl born with half a face tell of their battle to help her

‘She will start playing with other children because they won’t be scared of her.’ Pictures: Victor Guseinov

‘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.’

Elena said: ‘I want people to stop pointing fingers at her so she doesn’t feel unhappy.

Millions of people donate to give 5 year old Darina a chance to smile


Millions of people donate to give 5 year old Darina a chance to smile


Millions of people donate to give 5 year old Darina a chance to smile


Darina with eldest brother

Thankfully Darina’s story of her struggle to smile and live normally was chosen by one of Russia’s largest charity funds called RusFond which helped to gather the whole amount. Pictures: Valeria Sukhova, Vera Salnitskaya

‘Darina is now old enough to understand everything. 

‘My mother’s intuition is it will be be a complete success. 

‘As soon as we started all the preparations for our trip - I immediately had a feeling of success.’ 

We hope and pray she is right. 

Good luck Darina!

Comments (19)

Thanks to Siberian times to be so valiant and show Darina's pledge in all its crudity. Hers are a mother and a father to be really proud of. My desires of success and a perfect job for the small army of nurses, doctors and surgeons. Hope the beancounters at Great Ormond Street Hospital for Children in London will show some humanity and spare no effort to get the job well done. Good luck!
Abbas, Spain
28/06/2019 03:31
16
0
Sending you much love, prayers and healing light sweet little Darina. It is going to be ok....God is with you and your mom and dad.....you are beautiful soul and no one can take that away from you.
Valerie, Philadelphia, PA, USA
27/06/2019 17:56
17
1
Much love and prayers. You are a beautiful person and very much loved. I am certain things will go very well for you Darina.
Allison, Austin, Texas, USA
27/06/2019 03:32
19
2
Prayers for success and a speedy recovery.
She looks so uncomfortable.
Reaearch needed to figure this out...
chip1949, Ashland/USA
26/06/2019 21:15
18
2
12

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