There are 300 sunny days a year in the city of Ussuriysk where little Katya lives. She loves to help her mom - as soon as the girl has some spare time, she first of all runs to her to keep house together. But it happens not often at all, only when Katya is able to get off the bed.
Katya is ill from the moment of her birth. She got a rear and dangerous illness – primary immunodeficiency, Muckle-Wells syndrome. From the first days of her life doctors have been telling her mother, that they don’t know, how much time will the child live.
But the baby has been growing up contrary to all the predictions. She is growing, pleasing her parents. But not in the least was it easy for Katya – starting with the first day, her life turned into a long train of hospitals, comfortless wards and painful medical procedures. Almost every week Katya has a high fever. In such days the child feels particularly bad.
In three years Katya and her mother were to almost all of the hospitals of Ussuriysk and Primorskiy Kray. And only a month ago, after a long examination, Moscow specialists made the correct diagnosis - primary immunodeficiency, Muckle-Wells syndrome. It is a cruel genetic disease. The girl has a constant fever, joints get swollen, the child is losing hearing, and as a result of renal amyloidosis or possible heart failure might pass away. Council of physicians at the Federal Research and Clinical Center of Pediatric Hematology, Oncology and Immunology (FRC-PHOI) prescribed a 6-month treatment course with an expensive Anakinra medicine. There are no analogs to this drug, but it’s still not registered and not available for sale in Russia. Life-saving treatment course costs 10,000 euros. The girl’s mother is collecting documents in Ussuriysk in order to launch an application to the Ministry of Health, asking to provide the child with the essential drug – the law allows that. However in reality it is not possible to count on immediate involvement and solution to the problem on behalf of the government. Officials' red tape will likely only worsen the situation with the baby's health. Katya needs the drug now, the sooner the better. By the way, "Anakinra" starts working next day after beginning of the treatment, and if we can give up something small in order to give life to the child, we must do it. Otherwise, what for are the money at all?