Russian couple face tough challenges raising child with rare condition
Helena and Yuri Spengler have been a couple since they went to school together. They got married at a young age and over the years had three wonderful children. But a big surprise came along when Helena — aged 42 and already a grandmother — noticed that she was pregnant again.
After the couple had tried to conceive more children for 18 years, they were so happy about the news and couldn’t wait for the birth. Fortunately, the pregnancy was smooth sailing without complications. Even throughout all the ultrasound examinations, the doctors never noticed anything unusual. And yet the baby arrived a month early.
With all the anticipation and longing, the day of birth turned out to be an absolute nightmare for Helena. When Darina saw the light of the world, the doctors fell silent. Instead of placing the newborn baby in her mother's arms, they took her away without saying a word. After Helen had recovered from the delivery, she wanted to see her daughter. The nurse wanting to prepare her asked Helena, "Are you ready?"
Darina was so weak, she could only survive in an incubator. At first Helena saw her little girl's body, then her head, and finally her face. At the sight of this, the mother became faint.
Helena suffered a shock and only managed to regain consciousness in the reanimation room. The sight of her own daughter had terrified her. The mother later learned from the doctors that Darina was born with a rare genetic disorder known as Nager syndrome. This disorder makes the affected person's face look like a distorted mask. Judging by Darina's poor state of health, the doctors were unsure whether she would survive the next weeks and months at all.
The doctors advised the mother to leave the girl in the clinic and let her be taken care of in a children’s home. Just then, her husband Yuri entered the room to visit his wife and daughter. When the nurse showed the baby to her father, Helena was already dreading his reaction. But Yuri did not mind. "There's our sweet girl!” he cried, kissing his little angel. Soon after, Darina was handed over to the care of her parents.
Not even the closest friends and family could understand the couple's decision to keep Darina. They said to Helena and Yuri time and again: "She will never be able to lead a normal life. She will die soon. It will destroy your life." But they refused to listen to this criticism and decided to move to another city. They received the support they needed from their three children. Helena and Yuri's grandsons also loved to play with their little aunt.
Contrary to all prognoses, Darina got stronger every day. She is a happy-go-lucky little girl who, like most children her age, loves watching cartoons, wearing princess dresses, singing, and going on long walks with her mom and dad. When she is out and about, strangers often stare at her, but her parents don’t want to hide her away from the world. And even though some people even ask them to hide their daughter’s face behind a mask, the couple respond by saying, "If you don't want to see her, you can look away. To us, she is beautiful just the way she is!"
At the age of three, Darina's parents finally initiated a donation campaign and turned to the public for support. To be able to talk when she’s older and eat solid food, Darina will need reconstructive surgery to provide her with the lips that she's been missing since birth. Darina has already undergone her first surgery and her parents are optimistic that further operations will help to make their daughter's future much better.
Among other things, Darina's story was also shown on Russian TV. Here you can watch a video about her (in Russian):
Darina is loved by her family but she still hasn’t experienced how horrible and cruel the world can be. We can only wish her great strength and the best of luck for her future. But with such amazing parents, siblings and nephews, she already has a wonderful support network to help her go on and overcome life's obstacles.