Our story is well known to you, because in the most difficult period of our life you stayed with us. When Ksenia was born she was diagnosed with one of the most serious heart disorders: she has one ventricle instead of two. The doctors in Bakulev Heart Centre in Moscow said that we would need two complicated surgeries. And they also added that the chances to survive for our baby are minor and that we should do our best to perform the surgeries in Germany, with the first one to be performed in the next few weeks.
Then you came to our rescue. It is terrible to think what would happen to Ksenia without your help. We stayed in the hospital department with tow new-born boys with the same disorders. Unfortunately they are not alive any more.The first Glenn operation was successful. When we were leaving the hospital the doctors explained to us that it saved the child’s life, however it did not correct the disorder completely: as Ksenia will grow, the level of oxygen in her blood will go down, her health will become worse and then the next surgery Fontan operation — will be needed.
After that Ksenia’s father and I were waiting when one of the doctor’s examinations ends up with the words «Now it’s the time for it». And Ksenia was living her simple life. Like other babies she learned to turn around, to sit up, to crawl and then — to stand up, to walk, to talk, to run. She became the biggest joy and happiness in our life. She is developing on the same pace with her peers, to the doctor’s surprise. She is very smart: she likes to listen to somebody reading her favorite books, she can tell the story about a turnip and Kolobok, she enjoys building puzzles. She affectionately takes care of her toy-daughter Polya: puts it in clothes, walks with her baby stroller and covers her gently. Our daughter is very tender: she often hugs us and pats her mom and dad on the head. She likes to play with the kids at the playground, walks with them holding by the hand and always shares her toys. She is our sun.
She has also found her own child’s way to live with her disease. It is us who are very nervous about her breathing. But she has got used to the doctor’s care, she takes medicines without complaints every day, she lets her heart being listened and even starts raising her T-shirt when a doctor takes out a phonendoscope. We even sometimes hoped that the disease retreated and no surgery will be needed.
But Ksenia took us back to reality at the moments when she had difficult breathing and her finger tips wee getting blue, when during the children’s games or while walking in the street she came up to us and asked to «uppy Phuphu» (that’s the way she says her name). Her little heart can not bear the ever-growing load. And recently we have heard the words that we were scared of. It is the time for the second surgery.
This surgery is even more complicated than the ones that Ksenia has already undergone. In Russia they perform this type of surgery on the children of around five years old. There is no experience in performing it on one-year old babies. Ksenia does not have another 4 years in store. Again we are begging you to help to save our Ksenia’s life. The invoice of the clinic states EUR 40600. I am taking care of the baby and working remotely, our father is working now almost every day. But we are not able to earn so much money. Our daughter loves the life, we love her. Please, help!