The story of how Nasiba, 32, and her 2-year-old son, Akram, both became infected with HIV is not the familiar one of an unfaithful husband and a mother unwittingly infecting her child.
Nasiba and Akram live in Yangi-Nookat village, in southwestern Kyrgyzstan's Nookat District, where most people support themselves by small-scale farming and unemployment is so high that many have left for Russia and other countries in search of jobs.
Akram was seven months old when he developed a high fever and Nasiba took him to the local hospital in Nookat. "When doctors saw the baby had a temperature of 40 degrees centigrade, they decided to use a catheter [to administer intravenous fluids] in order to bring down the high temperature," she recalled.
Later it was discovered that the catheter needle had infected Akram with HIV; but, unaware of the risk, Nasiba continued to breastfeed her son. She now believes she became infected through a small cut in her breast when Akram had a mouth infection.
A doctor in Ferghana, in neighbouring Uzbekistan, diagnosed both of them as HIV-positive some time later. Nasiba's husband reacted to the news by kicking his wife and child out of the house.
"He beat me up and told me to go to the place where I got infected. He did not believe what I told him," Nasiba said tearfully. Fortunately, her husband's parents took her and Akram into their home, where they have stayed ever since.
Because of poverty and stigma, the parents of HIV-positive children in Kyrgyzstan sometimes put their children into state nursing homes, but Nasiba was doubtful about the quality of care the children in such places received.
|I will never give my son to a nursing home; he will live only with me|
"Once they [her in-laws] told me angrily: 'Since the child got infected because of [negligence by] the state [medical workers], it is the state that must treat him and provide all the necessary things'," Nasiba told IRIN/PlusNews. "But I will never give my son to a nursing home; he will live only with me."
Akram is now two years old but can neither walk nor talk. He is on antiretroviral (ARV) treatment but, Nasiba said, "We have problems getting timely delivery of the necessary medicines."
Interruptions in ARV therapy can cause the virus to mutate and become resistant to the drugs, leading to treatment failure. "I am lost and I do not know what to do. I know only one thing: I should do everything to make my son feel good," said Nasiba.
Kyrgyzstan's Health Ministry recorded 1,700 adults and 86 children living with HIV by July 2008, out of the country's population of five million. Almost half of these were from Osh Province, where Nasiba lives. This year alone, 41 infants were diagnosed with HIV in Osh.
Every day people come to Nasiba to ask her advice, or simply to have a good cry after discovering their child has HIV. "They come from Nookat, Osh and Karasuu districts to see me. I do not know how they found me," she said. "Because of stigma, they are afraid that people will find out that their families have HIV-positive members."
Nasiba took part in a recent HIV/AIDS training programme organised by the UN Children's Fund (UNICEF) in the Kyrgyz resort area of Issykkul. The course was attended by experts, psychologists, government officials and non-governmental organisations (NGOs) from the Central Asian states.
"All of us talked about the problems that families with HIV-positive members have," said Nasiba. "I received a lot of information, and so much moral support that when I returned home I conducted similar seminars for parents of HIV-positive children. You cannot imagine how they listened to me; how important it is to us!"