Elena Shpengler knew something was wrong with her baby when the doctors looked concerned immediately after her delivery. Before handing her the baby, the doctors started making calls, wrapped her up in blankets and wouldn’t let Elena see her.
After her desperate plea, she was handed over the baby. She picked through the blankets and what she saw shocked her that she lost consciousness.Her daughter Darina, had half a face. She was suffering from a serious genetic mutation that left her with no lips or chin.
Doctors advised her to leave the baby at the hospital. This meant that their daughter would go into their country’s grim orphanage system. The idea of it killed her inside so Elena and her husband, Yury, refused.
“She is ours, our girl,” Yury told Elena.
Since the baby was born, the Shpenglershave been
treated with cruelty, not only from strangers, but from the closest people to
them and to avoid more drama,they opted to move away.
“Only my sister supported me, all other relatives just stopped any communication with us. My brothers, their children, and my husband’s mother – nobody wanted to accept Darina.” Elena said
“We do not hide Darina from people. We take her everywhere
with us,” Elena said. “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.”
Like most children her age, she loves watching cartoons, wearing princess dresses, singing, and going on long walks with her mom and dad but outside the house, People’s reactions to her condition made raising her normal very difficult.
Darina was denied access to kindergarten as the school thought other children “would be scared.” Social services sends two teachers to visit Darina once a week so she can get a basic education, but Elena wants her to be able to get out and make friends.
“She is such a sociable girl,” she said. “We have bought
lots of toys for her but nothing can replace friends.”
Doctors told them thatDarina will have to undergo surgeries
every two years. The three-year-old has already completed one surgery where her
mouth was sewn to make it smaller, and she is believed to be recovering well.The Shpenglers
have raised money to pay for medical treatment in Moscow. “The truth is this
trouble has only brought us together,” Elena said.