Aykanat Adakaev

8 years old, the Republic of Altai
Diagnosis: Primary immunodeficiency. Hyper IgM Syndrome.
After the repeated transplantation of bone marrow, graft versus host disease has followed.
A 2-month rent of the outpatient apartment was paid. The total cost was 70,000 rubles.

Story

A complication followed the bone marrow transplantation - boy has developed stage 3 skin involvement with graft versus host disease (GVHD). Immunosuppressive therapy was administered to him, and treatment response won’t be quick. Since Aykanat lives very far away, and there is no adequate medical supervision there, he will continue to be supervised and treated at the Department of Clinical Immunology in the RCCH on a half outpatient basis. Until stable improvement of the disease and complete relief of the skin syndrome are achieved, Aykanat will live with his mother in an outpatient apartment of the Fund in Moscow.

Aykanat's family is not rich at all, but the boy needs selective feeding and constant care for the skin by various means.

Before the New Year, Aykanat had celebrated his eighth birthday in the hospital. With a short break for the New Year, his hospital stay is lasting for 6 months already, and returning home is not yet expected. The main thing now is that improvement of the disease is observed, and in the apartment he’ll feel a little better, being not so upset that he is not allowed to play with other kids in the department's hallway.

Aykanat started to fall ill from the very moment of his birth. During the first two years of his life, the boy was constantly tortured with acute respiratory viral infections, chronic rhinitis, and other diseases, which were coming one after another. In the 3rd year of his life, Ayakanat fell ill 16 times! Besides previously mentioned diseases, he started having purulent infections.

Aykanat couldn’t get a correct diagnosis in his native Altai for a very long time. Doctors were shrugging shoulders considering the abundance of diseases; lack of information on primary immunodeficiency definitely played its role, too. Only in the Barnaul Diagnostic Clinic primary immunodeficiency was finally detected in 2008, and Aykanat was recognized to be a disabled person. Same year he and his mother were directed to Moscow.

Rena, the mother of Aykanat, left her husband, two elder daughters, and the job of a nurse in Altai and went with her son to the RCCH. Here Aykanat’s diagnosis was confirmed. He needed the most radical treatment mode - bone morrow transplantation. Aysulu, Ayakanat’s sister, who is only 12 now, matched as a donor.

But 3 years later after the first transplantation Aykanat’s body started producing its own cells, and doctors made a decision that a second transplantation is necessary. 

8 months have passed since the 2nd transplantation, Aykanat keeps struggling, he is on the mend. Postoperative period is crucially important, since it is now being determined whether Aykanat will live a full life. The kid has to constantly observe sterile conditions, take hormonal agents and come to Moscow for examinations on a regular basis.

For a 7-year-old boy it’s not easy at all, but this is a chance! And Aykanat stands all the hardships very courageously.

What has been done

July 27, 2011 – The “ Bazelevs” film production company paid for the air tickets (Barnaul – Moscow – Barnaul), so that Aykanat could be taken to the RCCH.

December 24, 2010 - Fluticasone spray (1 pack) was purchased for the amount of 630 rubles.