Anatoly Alekseev

6 months old, Yakutsk
Diagnosis: Primary immunodeficiency. Chronic granulomatous disease.
Expenses for a 10-day course of Vfend and Caspofungin medicines were covered for Anatoly.
At this moment he is placed in the Russian Children’s Clinical Hospital in Moscow. Doctors are examining him and are to make a decision regarding the subsequent therapeutic approach.

Story

On February 14 of this year, on St. Valentine's Day, 28-year-old Mary gave birth to the long-awaited son Anatoly.

Here’s what Mary told us about her son: “Anatoly is our firstborn. I’m 28 and my husband is 27. The child was planned and long expected. My husband and I married in 2007, although we met in 2001 in Novosibirsk when we were students. After the wedding, we decided to wait with children until my husband finishes studying, finds a job, and we acquire some dwelling. A year before anticipated conception I turned to a family planning clinic in order to bear a healthy child. Anatoly was born on February 14, 2001 - on St. Valentine's Day. His birth weight was fine – 3.89 kg, and his Apgar score was 8/9. Our happiness was infinite!”

But at the age of 2 months he suddenly fell ill.

Assuming it was rotavirus, the infant was taken to the Municipal Pediatric Hospital #2 in the city of Yakutsk. Since then the child stays in the hospital. Due to fever Anatoly was being examined for a long period of time, as a result niduses of mycotic infection were detected in lungs and liver. The number of niduses was growing, medicines were not helping, Anatoly was burning up before our very eyes. Since July 15 Anatoly was in intensive care unit, diagnosed with concurrent bacterial and fungal sepsis. Suspicion of Anatoly having a genetic disorder of the immune system was aroused.

On August 9 there was a video conference held with the Russian Children’s Clinical Hospital (RCCH), as a result Moscow doctors made a diagnosis of primary immunodeficiency and chronic granulomatous disease. But hospitalization of Anatoly to the RCCH is possible only in September.

“After learning about the diagnosis of primary immunodeficiency we couldn’t believe,” says Mary, “that in our young, happy and healthy family could born a hopelessly ill child. None of our relatives ever had children with such diagnosis. I still can’t believe that I could be the carrier of the mutated gene which caused primary immunodeficiency of my child. I’ve read on the Internet that mutated genes are passed down from the mother's side. My mother (born in 1960) grew up in the Nyurbinskiy Region of the Yakutiya Republic, where starting from 1957 second stages of space launch vehicles were dropped, along with heptyl propellant residues. Of course, the environment of the region has been damaged. Maybe my child has become a victim of those events. More than half a century has passed, but the child was affected.”

At this moment Anatoly needs expensive antifungal agents “Vfend” and “Caspofungin”. Moreover, these drugs are not sold in any of the Yakutsk pharmacies, and hospital’s quota for these medicines in 2011 is already full. Anatoly’s mother bought several ampoules through her Moscow acquaintances in one of the capital’s pharmacies. On August 8 Anatoly started being injected with Caspofungin.

“We have great expectations for the therapy instituted by the doctors from the RCCH,” says Mary, Anatoly’s mother. “One ampoule of Caspofungin lasts 2-3 days. We have enough Caspofungin to last him till August 27.” As for Vfend, one ampoule of this drug lasts Anatoly for 1 day. The hospital provided him Vfend for some time, but the supplies are running out. Mary had to purchase 7 ampoules at her own expense, 5 more were donated by the family of a girl who was down with mycotic pneumonia last year. Available Vfend supplies will run out on August 27 too.

“It turns out that life of my child costs over 15,000 rubles a day. Our savings are exhausted, that’s why we are begging you for help”, says Mary.

Till September Anatoly will have to receive treatment in Yakutsk. He is in the intensive care unit, in a serious but stable condition. Day by day the kid becomes weaker and weaker. He gets tiny amounts of food through a feeding tube; one can see how much he has slimmed down, hands and legs became very thin. The kid has spent these 4 weeks in the intensive care unit alone, without his mom, 24 hours a day lying tied to bed not to damage wires from the droppers or the feeding tube.

Mary hopes very much that the treatment administered by the doctors of the Yakutsk hospital and the RCHH will help, that Anatoly will feel better and finally will be moved from the intensive care unit to a ward where he will be able to stay with her, his mother.