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'Gennadii Iudin, the Krasnoyarsk distiller made millions in the liquor trade and built Siberia's greatest private library'
W.Bruce Lincoln

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

By The Siberian Times reporter
06 June 2017

When Darina was born 3 years ago without lips and a chin, her mother lost consciousness from shock, and soon her family disowned the child.

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: Victor Guseinov

Now mother Elena Shpengler, 46, is fighting back against the prejudice faced by her infant daughter, as doctors begin the slow process to rebuild her face. 

'She does not have lips. Her mouth is constantly open and all the time in blood,' said the loving mother from Krasnoyarsk region.

'Only my sister supported me, all other relatives just stopped any communication with us.

'My brothers, their children, the mother of my husband - nobody wanted to accept Darina. 

'They just did not notice her since she was born. But we do not  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.'

Fighting stigma: parents of girl born with half a face tell of their battle to help her
Darina with parents. Picture: Victor Guseinov


Worse, she said, their relatives told police they had damaged Darina's mouth themselves. 

'I got a call from the police,' she said. 'They demanded explanations. Our surgeons were shocked to hear all this.

'Of course it will be sorted very soon but we are so nervous, and we need all our powers to help Darina. We need to raise and support her, she has a lot to overcome.'

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.

Nothing abnormal had shown up on scans. 

Maternity hospital staff urged her to give up the baby, who would then be sent to grim orphanages. 

'I soon realised that something was wrong,' she recalls of the moments after she gave birth. 'The doctors were worried and started calling somewhere. 

'The baby was wrapped and I did not see her properly. A bit later 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.'

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


At the time her husband Yury was in another hospital after narrowly averting death in a  car crash. 

'As soon as he felt better, he rushed to see us. His face did not change when he saw Darina. 'She is ours, our girl', he insisted.

'The truth is this trouble has only brought us together.'

But it has been agony for Elena watching her child suffer pain, and feeling a lack of support in raising the child, and helping her. 

'The doctors did not help me to take of my child,' 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.

'She does not have lips. Her mouth was constantly open and all the time in blood. 

'I was buying an apricot oil, boiled chamomile flowers and made sort of herbal applications. 

'I trying to listen to my instincts. Of course, I could not breast feed her, so I was pumping for hours.' 

Fighting stigma: parents of girl born with half a face tell of their battle to help her
Surgeon Orest Topolnitsky. Picture: Victor Guseinov


Finally she was urged to seek assistance from medical experts in Moscow. 

'Darina has a serious genetic failure, with 8 mutations in her body,' said Elena. 'Her mouth was constantly bleeding. She still can't eat solids, only liquid food. 

'We were told that it was not due to our ages. Such a child can be born at any age.'

Now Darina is on a long, slow road to recover her face. 

For Elena, there is huge pain over the reaction of her relatives. 

'We did not want such a war with relatives and decided to go away from our village of Volny,' she said.

'Only our adult children and their families support us and love Darina. 

'They confessed that at first it was hard to look at her but now they got used to it and support us.

'My husband Yury does not feel ashamed either.

'He takes Darina everywhere. People told us to put a mask on her but he 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, the social centre 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.

'She likes to sing. She likes put on clothes and look at herself in the mirror. She loves building blocks and construction sets. 

'It is rather hard for her, because only two fingers on each hand are active enough.

'She does not have joints in other fingers and we can't do anything about it.'

Fighting stigma: parents of girl born with half a face tell of their battle to help her
'Darina has a serious genetic failure, with 8 mutations in her body,' said Elena. Picture: Victor Guseinov


Elena has given up work to look after Darina. 

The couple are not wealthy but they raised the money to bring their daughter to Moscow for medical treatment. 

'My daughter has friends here. One old Muscovite, he is 80, got to know about her and calls himself her admirer. He comes to see her every week. 

'And one woman Valentina Alexandrovna brought toys for Darina and asked if she can be our grandmother because she does not have her own grandchildren. 

'Of course we agreed.'

This kindness in the capital city means the world to Elena. Darina is recovering after the first successful surgery. 

'Doctors sewed her mouth and made it smaller. Now they plan to make lips for her and to grow bones and muscles for her chin.'

Yet the girl will face surgery every two years.  

Surgeon Orest Topolnitsky, who operated on Darina, said: 'This girl is now in our hospital. It is a very rare case.

'Many charity funds refused to help saying that she would die soon anyway. 

'We took a risk and operated her as a part of free governmental insurance. 

'But the girl needs more surgeries. 

'We have done the first and the most difficult one.

'It was risky because the child is very small, any bleeding is a threat for her. 

'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.'

Fighting stigma: parents of girl born with half a face tell of their battle to help her
Krasnoyarsk. Picture: Slava Stepanov 


What explains this attitude from relatives? 

One woman who commented to Komsomolskaya PRavda newspaper may have put her finger on it. 

The relatives live in a small village and know their children will probably marry locally in the future. 

'They must prove that there was no pathology in their family, otherwise their kids have no chances in a small community,' it was claimed.

'So they have to prove that those parents have beaten and hurt the girl themselves, and that mother nature has nothing to do with it.'

We set up a funding page - grateful if you can share the link: https://www.gofundme.com/helpingDarina

Thank you,

All the best,

Team The Siberian Times

Comments (26)

Just wanted to say how much this story has touched me. She is such a beautiful child, and deserves a chance at a good life. God bless her parents, medical staff, as well as everyone contributing to her GoFundMe. Sending prayers and positive vibes from Canada.
Jonathan , Ontario, Canada
10/08/2017 05:27
0
0
Hi Veronica - many thanks for your question.

We (The Siberian Times) set up the funding page because there was no other way to transfer money to the family.

Once the amount is gathered, it'll be transferred to Elena, Darina's mother, and we'll be there with a camera to document the moment and share it with everyone who donated and sent messages of support, and all our readers.

Thank you again for your donation earlier,
Best wishes from Siberia
The Siberian Times,
19/06/2017 23:15
5
0
Please let us know if the GoFundMe location will be able to get the money to this family -
otherwise people are paying in for nothing & then we have to wonder where it will go ?????
This question was because one of the posters did say they can only get money to them via
their own Russian bank location ?
Veronica, USA
19/06/2017 22:41
0
0
Thank you Siberian Times for sharing Darina and her family's story. This is a wonderful example of the media being used for something positive, and I wish them all them all the best - they are deserving of some good luck...
Josette, Australia
19/06/2017 17:29
2
0
No doubt pollution and environmental toxins have played a part.
I hope the government can provide the assistance this child needs. (Seeing as the pollution is theirs)
Peter, Toronto
12/06/2017 16:43
2
7
i found the gofundme's page they made for the sweet Darina , i also made some #hashtagg on facebook like #darina , #helpdarina, please share . I was happy to send a donation, it s a little help but couldn't not participate.
https://www.gofundme.com/helpingDarina?viewcontent=ySnWhyM9b-OcJKftBoiwvcKX-nug4Q1GNHB7Tb8mWaI.
♥ Love you little Darina ♥
Carole D, Toulouse - France
11/06/2017 21:47
9
0
I have heard “The eyes are the windows to the soul” and she already has a beautiful smile in them .
Love lift you in all you do .
Lana, North Carolina U.S.A
11/06/2017 01:53
12
0
My best wishes to this wonderful family i am sûre that little girl will look different in the next tirée years
liguori Leclerc, TROIS-RiViÉRES, Canada
11/06/2017 01:21
9
2
What a sad/beautiful story I hope you will find the help that is out there simewhere in Russia Plastic surgery and pain but surely in the end she will be better guarded from infection of an opening to her uncovered wound You are so loving that I feel sure it will happen I love your beautiful country and hope again to visit though I have been on 3 beautiful trips there (right through your city on the Trans Suberian train from Mosciw to Vladivostok (a gift to me on my 80th birthday) All my good wishes go with you both and your beautiful daughter
Patricis Gothsrd, Laguna woods CA USA
10/06/2017 23:32
7
0
Are there any ways to rebuild her face ? Stem cells ???
Ray Tsang, Hong Kong
10/06/2017 22:00
4
2
Dear all,
So many thanks for your words of support and offers of help to little Darina and her family. We set up a funding page for them, grateful if you can share the link.
All the best,
yours,
team The Siberian Times
https://www.gofundme.com/helpingDarina
The Siberian Times , Siberia
10/06/2017 01:32
9
0
I feel for this family and I want to help as well . I am sure there is a way out of this hardship on a collective level. Keep in mind there are breakthroughs in facial reconstructive procedures all the time. Please keep the readership up to date on this evolving situation.

All the best .
Valerie Simanovic, Ontario Canada
09/06/2017 23:19
8
0
Dear all,

Sincere thank you for your kind words of support for Darina and her family.

We have been in touch with Darina's mother who was overwhelmed to hear about your response to their story.

She asked to pass her heartfelt gratitude back to each and every one of you.

Darina's mother Russian bank account only accepts payments in roubles from within Russia.

She doesn't have a PayPal account, or a bank account that would accept payments from abroad.

Now... we realise this is a very expensive option, and we are looking into other ways of tranferring money, but IF you feel this works for you, Western Union payments can be made to Elena Ivanovna Shpengler (Елена Ивановна Шпенглер), Russia, and copies of payment slips will have to be sent to our news@siberiantimes.com email so that we can pass them to Elena.

We know this is like the longest route possible, and checking out ways of setting Darina's fund on either of crowdfunding platforms.
The Siberian Times,
09/06/2017 16:13
10
0
I already sent a message to feedback@siberiantimes.com asking for a giving page...
Miguel Angel, Barcelona
09/06/2017 14:57
5
0
Every child deserves to feel loved and protected by family members. Darina has the most wonderful patents beside her for any challenges she will face in the future. It is so unfortunate that Darina and her parents don't have the support from some of those closest to them; for those who have turned their back on this family, remember your life can change in a heartbeat, through a stroke or disfigurement of some kind, how would you feel if those closest to you turned their back on you for being different? All the best for what ever the future holds for Darina and her family.
Kay Bennett, New Zealand
09/06/2017 12:39
11
0
12

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