6-year-old Darina Spengler from the Krasnoyarsk Territory was born with an anomaly, due to which she has no lips and chin. In general, the entire lower part of her face is not developed. The girl was never officially diagnosed, but it is believed that she has the rare congenital Nager's Syndrome.
The mother did not know anything about this anomaly before giving birth, and when Darina was born, the nurses did not show the child to the mother for a long time - Elena Spengler. When they finally brought her the girl, the mother fainted, barely looking at her.
Darina's father was completely unperturbed when he saw the child. “His face hasn't changed at all,” says Elena.
When doctors began to recommend Elena to abandon the child, the mother did not listen to them. Subsequently, because of Darina's condition, the girl's parents quarreled with most of their relatives (they blamed them for not leaving the child in the hospital) and left the village where they lived.
When Darina was younger, she cried a lot, because the tissues around her jaws were constantly bleeding and hurting.
For several years, the girl's parents tried to find help from Russian surgeons, but no one could help them. Hope was awakened when the chance arose to travel to the UK at the famous London Children's Hospital on Great Ormond Street.
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Because of her open jaws, it is very difficult for Darina to eat, therefore, at the age of six, she weighs below normal and looks like she will not give more than four. After an operation that closes her jaw, she can finally eat like everyone else.
But most of all, the girl's parents hope that during the operation her vocal cords will also be corrected, because Darina cannot yet utter a word.
Darina's appearance shocks many untrained people. Passers-by on the streets look after her, and some even advise the girl's parents to put on a mask on Darin. Because of this, Darina does not have friends among the children, the children are afraid to play with her.
Once the girl's parents were even accused of inflicting these wounds on her. The police called them and demanded to tell what happened. Only after all the explanations did the police stop harassing them.
Darina has normal mental development and already understands that something is wrong with her. Parents are worried about this, but refuse to hide the girl from society, and even more so to put a mask on her. They accept her for who she is, even though the girl was not accepted to any kindergarten because of her appearance. A couple of times a week, teachers come to Darina's house and teach her to read and write.
Darina and her mother Elena have already arrived in London and are now preparing for the operation. The cost of the operation is 85 thousand dollars and is paid by Russian philanthropists through the Rusfond society.
Nager's syndrome affects the facial bones and is so rare that only about 100 such cases have been recorded in the world.