Anna A. Solomina
The first time I saw Volodya Lycenko was on a television program. His
was the feature story of the evening news. He was a skinny, feeble, emaciated
teenager who was the victim of the hereditary blood disease known as hemophilia.
Vladimir (Volodya) Lycenko was on the 27th of November, 1986. His pictures
from that time show a typically plump, rosy cheeked baby; little did he
know the misfortune that awaited him. When he was two years old, doctors
started to notice various bruises on his body; the doctors, however, misdiagnosed
the nature of his ailment. In November of 1988, Volodya entered the hospital
due to severe bleeding from the lips.
The diagnosis was terrible: hemophilia A. Volodya inherited the mutant
hemophilia gene from his mother, who was a carrier of the disease. I personally
met the boy at his home. I was amazed at all I had seen... He lives with
his father (His parents divorced when he was seven.) in an old, dark,
ramshackle house, where all the rooms look uninhabited. He doesn't even
have a phone. It is unbelievable that in the twenty-first century people
still live like this.In 1996, the boy was scheduled to receive an operation
to improve the working of his knee and elbow joints, both of which had
been severely affected by the disease.
Twice Volodya's parents requested State aid for this operation and both
times, they were refused. There are around 40 children in the Orenburg
region in a similar condition to his; the parents have united to form
a special fund to counter the State's lack of interest. In collecting
the information for this article, I was constantly faced with the problem
of silence. Volodya's doctor gave me only general statements about the
case. The Regional Medical Inspector confessed to me her incompetence
on this question. All of this silence compelled me to think...