Nastyenka’s story

(Anastasiya Olkhovskaya and Chronic Myelogenous Leukemia)
(Anastasiya - Russian girl name, dim. Nastya, Nastyenka, Nastyusha)

We have not had such a little child in our department before. Nastya is only 6 months young (as for April 2009), she cannot sit or speak yet. 3 of these 6 months she has spent in hospitals. Nastyenka became ill after she got a vaccine at the age of 3 month. It is practically a detective story. Previously parents were told that it was a measles/rubella vaccine. After the vaccine the child got high temperature that never stabilized, and the scandal was a fact. There appeared a new note in girl’s medical journal stating that vaccine was against poliomyelitis. We will hardly ever know for sure what really happened. During 3 months following the vaccination Nastya has continuously had fever, has lost appetite and has not slept well. Her abdomen grew bigger due to enlarged spleen and liver. The girl was examined by one specialist after another: Infectionist, gastroenterologist, oculist, and finally, haematologist. Doctors in Donetsk (Nastya comes from Volnovakha in the Donetsk Region) have never succeed in setting up a diagnosis. But a strong suspicion arose that she had leukaemia. She was sent to Okhmatdyt hospital in Kiev for further diagnosing. Here finally Nastya was diagnosed with chronic myelogenous monocytic leukaemia. And doctor’s conclusion – the only therapy option – allogenic bone marrow transplantation from alternative donor (not family). Nastya’s mother and father were overwhelmed by the news. The life of their little daughter can only be saved by an expensive surgery abroad. And the whole financial and psychological burden is placed on this young family’s shoulders. Everything – hopes for a happy childhood, family life in native town of Volnovakha, small joys and sorrows, first teeth, first steps, kindergarten, school – that everything was in danger because of the horrible illness and not at least horrible sum of money which is required to make all dreams come true – first words, steps, dresses, dolls, birthday parties. The cost of allogenic bone marrow transplantation varies between 150.000 USD in Belarus and Russia, Israel has offered surgery at 175.000 USD, it is 250.000 EUR in Germany. Nastya’s mother Marina is an accountant at a communal company Voda Donbassa, now at home with the child. Father is a driver. They have had to travel a lot between Kiev and Donetsk during last three months, and they keep ends meet only because of financial help from their parents, Nastya’s grandparents. Of course, they do not know where to get so much money to pay for the surgery. Thank God, we know that there is always a way out, and we can make this surgery possible. There were children who got their surgery even if it seemed in the beginning that there was no money to find and no help to get. Our help is all Nastya’s parents hope for.

At the beginning of July a woman from Moscow, Russia (who wished to remain anonymous) donated 60.000 USD to Nastya, this amount of money gave the chance to Nastya’s parents to organise a deposit payment for the Israel’s Sheba Medical Centre where Nastya will be under the doctors close observation everyday. At present time Nastaya is 10 month old, and she has been transported to Israel, Sheba Medical Centre. Hospital staff is looking for a Bone Marrow Donor and the volunteers are working hard to get the funds to proceed with the surgery. At the end of July a German Foundation " Ein Herz für Kinder" has donated 19.500 EUR (27.638 USD) which was a great help to Nastya. Volunteers and Media (Radio, TV, Newspapers) from many of the Eastern European countries (Ukraine, Russia, Latvia, Israel, Moldova, Belarus) and Europe (Ireland, Germany), and USA has collected 50.746 USD for today’s date (17th August 2009) the total amount collected is 138.384 USD, we are hoping and praying that we will collect the rest of the amount which is 36.616 USD as soon as possible because without the full amount, the hospital will NOT proceed to the surgery as it is much needed judging by the doctors prognoses Nastya may have another two month to live unless the Bone Marrow Transplantation is done. At present time Nastaya is 10 month old, and she has been transported to Israel, Sheba Medical Centre. Hospital staff is searching for a Bone Marrow Donor and the volunteers are working hard to get the funds to proceed with the surgery and help Nastya’s parents to pay for the accommodation and food.

Ukrainian Artist Kseniya Simonova has made a Sand Animation video for Nastya on the site : http://www.youtube.com/watch?v=E38W-QJ1ok8

International Association ‘Hematologist of the World for Children’ http://advita.ru/en/expend.php

Also information about Nastya can be found on her personal site: http://www.nastyalive.ucoz.ru/index/0-18