Watch a video about Elvira made by Tatiana ZHAKHOVSKAYA.
Parents Letter (February 13, 2012)
I am Elvira Zhukovina's father. On Sept 9, 2008 my little girl was born. My wife has another daughter by her first husband. She is 11 years old. Elvira is my first child. When my wife was pregnant, the baby was diagnosed with microgenia. The doctors said we didn't have to terminate pregnancy. Elvira was born with multiple malformations. She was diagnosed with Franceschetti's syndrom.
On October 23, 2008 after intensive care unit, children's hospital and many medical procedures, my baby was finally home. That's when I learned that Elvira has microgenia — her lower jaw is severely underdevelopped. She also has atresia of external ear canals, fingers displasia, tendomuscular clubfoot, valvular disease. Microgenia prevents our daughter from eating normally — we have been feeding her through a special tube since she was born. Elvira is observed by neurologist, dentist, cardiologist, and otolaryngologist.
When elvira was 18 months she had heart surgery. In May 2011 Elvira started walking herself though she has to wear orthopedic boots. Elya is a very smart and happy girl. She plays with her sister, loves cartoons and her toys, adores animals. She dances and sings. But she can't talk — her lower jaw won't let her. But our main problem is feeding. Elviral needs an oral surgery. Then our little daughter will be able to eat with a spoon and she'll talk to us. She wants it so much.
With great regard for what you do,
On Monday, Feb 13, we went to see Elvira. The girl lives in the atmosphere of love and care. Her parents and elder sister are very fond of her.
All moms express their love by cooking something delicious for their kids. Elvira can't be made happy this way — she doesn't know what tasty or untasty mean: food goes directly into her stomach through a special tube. We saw the process of feeding — It doesn't hurt but still
Of course, Elvira's family is used to it. And Elvira herself has never eaten normally — she doesn't know what food tastes like.
The girl is going to have an oral surgery at University Clinic Freiburg, Germany. The surgery will give Elvira and her family a chance to start a new life.