9-year-old Kseniya lives in a township with a beautiful name “Leo Tolstoy”. In 1852 the great writer finished his well-known “Childhood”, a story about a child’s carefree life, full of discoveries. Such was Kseniya’s life, too, until she was 3.
In May 2007 the girl got a sudden fever which lasted for whole two months! In the Lipetsk District Hospital doctors couldn’t figure out a diagnosis, and with suspected systemic lupus erythematosus she was taken to the Scientific Center of Children's Health (at the Russian Academy of Medical Sciences) in Moscow. From there she was transferred to the Department of Immunopathology at the Children’s Municipal Clinical Hospital, where Kseniya was suspected to have Louis–Bar syndrome.
After a while the girl got worse. As a result of another examination she was additionally diagnosed with hemophagocytic lymphohistiocytosis (a disease of bone marrow which is treated with chemotherapy only). For almost two years little Kseniya was receiving chemotherapy…
It was analyzed again and again, whether the girl has the Louis–Bar syndrome, but due to the absence of pronounced neurological symptoms doctors could not make an accurate diagnosis. In September 2010 Kseniya, followed by her mother, was admitted to the Department of Immunology at the Russian Children’s Clinical Hospital. After an examination the diagnosis of Louis–Bar syndrome was finally confirmed.
Probably, you’ve learned enough of Kseniya’s diseases. We would also like you to know that Kseniya is a modest and shy girl. It takes time for her to get used to new people around, and she hardly tolerates change of scenery. During her illness she has learned to endure pain. Sometimes it seems that an adult would have burst into tears, but she stands firm. Kseniya loves to help her mother in cooking, writes down recipes which seem interesting to her. Almost all of her spare time she spends playing and drawing. Recently, she even said that in the future she wants to be a doctor, therefore most of all she plays “hospital”.
Kseniya has a cherished dream to go to a sea. Her parents would gladly help her achieve this dream, but doctors prohibited her from being in the sun, so the parents don’t want to risk the health of their beloved daughter.
Antifungal agent Posaconazole is an essential drug for Kseniya, it fights with fungus diseases in her body. Without constant treatment with Posaconazole, fungus diseases can lead to a damage of lungs and other organs. Currently Kseniya’s mother is trying to get the vital drug from the government of the Lipetsk Region, but while the process of interaction with the officials will last, without the specified drug life-threatening irreversible changes can occur in the girl’s body.
We really hope that together we will help Kseniya to recover and realize her dream one day. How did Leo Tolstoy say? “To believe in the good, one should start doing it.”