Nikita Gurulev

6 years old, the Vladimir Region
Diagnosis: Primary immunodeficiency. Hyper IgM syndrome.
Pegfilgrastim (a supply for a 1-month course of treatment) was purchased for an amount of 52,500 rubles.

Story

Nikita was born on November 1, 2006. The boy was growing up healthy and strong: he teethed at 3 months and began to walk at 10 months. Nikita was falling ill rarely and was developing well.

In November 2008, Nikita was stricken down with a sudden disease. He had a fever for almost 1 month, reduced in weight significantly, his gums got inflamed. Medications were not helping, and parents took their son to a hospital. A series of tests were conducted and a bone marrow biopsy was performed there, but no accurate diagnosis was established. In February 2009, the boy was sent to a hematologist at the RCCH, where he was diagnosed with “neutropenia of unknown origin”. Nikita started to have recurrent episodes of stomatitis and fever, subdued only with antibiotics.

In April 2010, the kid was taken to the Department of Clinical Immunology of the RCCH, where his final diagnosis was determined to be primary immunodeficiency hyper IgM syndrome. Nikita began to receive infusions of immunoglobulin at home, but neutrophils were still dropping… Therefore, since February 2011, Nikita has been prescribed with Pegfilgrastim, which gives good results, but there are constant interruptions in obtaining the drug from the government. Today, on April 1, 2013, Nikita was released from the Department of Clinical Immunology of the RCCH after yet another planned hospitalization. Nikita needs to receive the next injection in 2 weeks, but a new round of fight with officials will take at least 2 months according to our experience. We have to backstop the kid for this timeperiod!