On August 15th 2010 in the foundation «Little Bee» Olesya Blagodir contacted with a request to help her little daughter.
Here is the letter we received:
Hello! My name is Olesya Blagodir, I am 28 years old, and I am from Kherson. Since childhood, I dreamed about everything related to children: I really wanted a sister (I have two older brothers) and to be a teacher. I graduated from the Kherson Pedagogical Institute, Faculty of Foreign Languages. Sisters, of course, I didn't have it, but the desire to have a baby girl never left me. And then one fine day I realized that I was no longer alone. I remember going to ultrasound and nervous, but what if it was a boy? Two older brothers and three nephews were enough for me. I dreamed of a daughter. Imagine my happiness when I held my little girl in my arms for the first time, I was the happiest person on earth!
Long before Ksyusha's birth, we chose her name — Marina. But one circumstance forced me to change the name: immediately after birth, Ksyusha turned yellow, she was taken to a hyperbaric chamber, and five days later, she was transferred to the regional children's hospital. For several days, she continued to turn yellower and more yellow. We were overcome with despair. Ksyushenka was born 6 on February on St. Xenia's Day. She is a very powerful patron saint, so 11 on February we named our daughter Xenia, in honor of the patron saint. It was decided to have Ksyushenka examined because her and other tests (herpes and VUMB) were significantly elevated. And then, like a bolt from the blue: a common bile duct cyst.
This cyst was seen in Ksiusha as early as the 24th week of pregnancy, but it was assumed to be an ovarian cyst, and we were told it was nothing serious. And then this! We lived in the hope that our little girl would grow out of it and all would be well, but the cyst stubbornly kept growing, and on 11 March 2009 my daughter was operated on. Kseniia was 1 year and 1 month old. The operation lasted 4 and a half hours, and all that time I was suspended between heaven and earth. I do not even remember what I was thinking about all that time; I stood and begged God not to abandon my little one. Those four hours felt like eternity.
Ksiusha had the cyst and the gall bladder removed. When our surgeon came out, tired but pleased, I understood at once. All was well. To this day I remember with horror the first time I saw my daughter after the operation: pale all over, tubes everywhere, her arms and legs tied down! The doctors said she was still under anaesthesia, but when I touched her little hand I felt her fingers move. For me that was a sign that everything would be all right. Then came another 10 days of suffering and tears; for 10 days Ksiusha was fed and given fluids only intravenously.
When we were leaving the hospital the doctor said to us: «Live and be happy, everything will be fine for you now», and we went home happy. But 4 months later the time came for a routine examination, and then a new misfortune: the scan showed that the bile ducts of the liver contained a multitude of cysts!!! Everything swam before my eyes! But perhaps — it was a mistake! We were given the diagnosis — Caroli disease! Shock! Half an hour later I was already at our doctor's. And again the same answer: «Nothing terrible, your girl is stable, go home, live and be happy.»
And then, at the end of autumn, came the first flare-up: bilirubin 45 (2 times above the norm), Ksiusha weak and fretful. And again the endless rounds of hospitals began. The most terrible thing is that Ksiushenka has long understood where we are going and why. She already knows that if in the morning we go out without eating, it means we are going to have tests done. She gets up, quietly hugs my leg, raises her little eyes full of tears and says: «Mummy, I don't want a prick-prick». And it feels like a thousand needles in my heart! And all of it only to prolong our life, as we were once told. It is very frightening to fall asleep and wake up with one and the same thought: has Ksiusha turned yellow? Every time she is out of sorts, to think — perhaps the bilirubin has risen, and what are we to do next if it has? Ksiushenka is a very cheerful and mischievous little girl! She knows a great many poems by heart, can count up to 9 (the number of steps in the entrance hall), and even knows some letters.
She is the only person in this world whom I love to distraction, and I cannot imagine life without my little swallow. Caroli disease was first described in 1958. It affects approximately 1 in 1000 000 people. This disease progresses constantly. It is accompanied by severe abdominal pain and by enlargement of the liver, which presses on all the other organs and deforms them. Gradually, secondary cirrhosis of the liver, polycystic disease and congenital fibrosis also develop. The disease is progressing much faster than usual. There is no cure for this condition. To reduce the crises of cholangitis, antibiotic therapy is given, and that is all. The condition gradually worsens and the work of many vital organs is disrupted.
Besides the constant pain, the frequent and sudden jaundice (a sharp rise in transaminases) and the deformed little tummy, cirrhosis awaits my little girl... As things stand, only a liver transplant can save my daughter; it will be done in Belgium, and the bill comes to 87 thousand euros.
In Belgium one has to spend from 6 to 9 months (examination, waiting for the operation and post-operative rehabilitation). For accommodation, current medical costs after the paid rehabilitation period, and the 6 and 12 month check-ups, another 13 — 16 thousand euros are needed. In all, judging by the example of 4 children from Ukraine who have had the operation, 103 thousand euros must be raised to pay for the first year of treatment (including the operation). This sum is unreal for our family.
Every day Ksiushenka gets worse and worse! Any commonplace infection provokes a crisis of cholangitis, and that is what happened this time too. Kseniia was in hospital from 5 to 10 August 2010. We were discharged with test results that leave much to be desired, having had everything possible done for our daughter, and we are continuing treatment as outpatients. I appeal to everyone who cares about a child's misfortune — please help us raise this sum, help us forget hospitals and begin to live without fear for my little one's life! Do not leave us alone with our misfortune!
A huge thank you to everyone in advance! Mother Olesia and little Ksiusha.
