Rodion Togulev

8 years old, Kazan
Diagnosis: Primary immunodeficiency, Wiskott-Aldrich syndrome. The boy has developed acute lymphoblastic leukemia as a complication of gene therapy. Post-bone marrow transplantation period.
6,000,000 rubles were raised on a Charitable Christmas Eve “Action! 2012” for the transplantation to be carried out in Hauner Children’s Hospital (Germany).
But now, after the transplantation, the Rodion’s family desperately needs financial aid – 250 euros a month - for food and necessary hygiene products. Thanks to the “Teva” company, which organized charity action “Right on target”, Rodion’s family received financial assistance in the amount of 10,000 rubles.


- He liked going to school, doing homework, making friends. “We were just like normal kids. We ran in the streets together, went to the movies. It ended all too suddenly - acute leukaemia “,-says, Irina, Rodion’s mother, barely holding back the tears.

It’s impossible to bear this story. Rodion Togulev from Kazan, eight years old. Diagnosis - primary immunodeficiency - Wiskott Aldrich syndrome. For a whole year the child was almost always in intensive care; a year later the boy had his spleen removed. What followed was the usual scenario - hospitals, intravenous drips and it is not clear in what world you live.

 - “I thought kids just get sick with a sore throat and flu”, says Irina, -“the diagnosis, which they gave us at the RCCH in Moscow, turned my whole world upside-down. I wanted to take my son, go to the forest and just hide.

Rodion's mother recalls the time when she learned to live again. In 2009, at the invitation of a German clinic, the boy underwent free experimental gene therapy – a bone marrow transplant. The operation produced positive results - Rodion began to recover. Every three months, his attending physician at the clinic in Munich, kept the child under observation. The boy began to live again, and he felt good. But in September of the same year, Rodion suddenly fell ill. In Kazan, at the Republic’s Children's Clinical Hospital he was given a new diagnosis - acute lymphoblastic leukaemia. In October this was confirmed in Germany.

“We thought that everything was behind us, and we had managed to escape” – says Irina – “but now not even chemotherapy can help my son…only a transplant – it is like a death sentence”.

Rodion draws cars with perfection. And like all other children (he is no different from other kids, after all) he loves watching cartoons. He knows little about his illness because his mother does not tell him that it might be fatal - mother and son do not want to lose hope. The German doctors, in whose charge the boy is currently under, help the child in any way they can. In addition to the intensive therapy, which they provide free, the Munich clinic does not charge Irina nor her son for the accommodation, living costs and care at the hospital. The doctors assure that they are doing everything possible to help the child from Russia, but the time left to save him has now almost gone.

Soon it will be New Year – that long-anticipated family holiday, all bright and cheerful Christmas trees and tangerine smells will fill the air. The midnight chimes will strike and we will wish each other good luck and health. And wait for the gifts - it always happens. Rodion, for example, is waiting for a car. And his mother - a simple miracle – to defeat the disease.