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Uzbek Girl Grows Up In The Shadow Of HIV

Saida is HIV-positive, although her family has not yet told her, and her mother talked to RFE/RL on condition her and her daughter's real names not be used.
Ten-year-old Saida dreams of becoming a doctor, so she can help cure all the sick children in Andijon, her hometown in eastern Uzbekistan. But her mother isn't making many plans for Saida's future.

Saida is HIV-positive, although the girl's family has not yet told her about the potentially fatal condition.

Her mother, Umeda, has learned to keep many secrets since local doctors performed a routine blood test in 2008 and determined that Saida had the human immunodeficiency virus. Despite global advancements in the treatment and understanding of HIV and AIDS, many in Uzbekistan shun patients out of fear that the virus can be spread through general contact.

Fully aware of the social stigma associated with HIV/AIDS, Umeda tells her story to RFE/RL's Uzbek Service only on condition that her and her daughter's real names not be disclosed.

She says that, upon hearing of the diagnosis, her husband promptly walked out and hasn't contacted Saida or her two siblings since.

After the couple divorced, Umeda and her children moved back to her parents' home. However, Umeda's brothers and sisters-in-law moved out. The reason, Umeda explains, was because her sisters-in-law did not want Saida to play with their children because they feared she would infect them.

At times, she says, her relatives took extreme and unnecessary precautions to avoid contact. "My relatives made sure we didn't wash Saida and their children's clothes together. They didn't allow Saida and their children to eat together, or share plates or mugs," Umeda says.

Hoping For A Future

It remains a mystery how Saida was infected. Any family connection has been ruled out, because no one else has tested positive.

Umeda's only hope is that a cure is found before her daughter reaches adulthood.
Umeda's only hope is that a cure is found before her daughter reaches adulthood.
That has led Umeda to focus on a vaccination her daughter received as a baby as a possible source of infection. But after taking legal action against the medical facility that vaccinated her daughter, Umeda's case fell through when a court decided there was no proof to support the claim.

There are no official statistics on the number of children living with HIV/AIDS in Uzbekistan, although the state does provide a disability allowance for patients.

Saida receives about $85 a month, as well as free medication that doctors have prescribed to counter HIV. "The HIV medications are free, but there are many other HIV-related medical treatments that I have to pay for, and they are very expensive," Umeda says.

This means that Umeda, who works as a social worker, must spend "most of the family's income on Saida's treatments and well-being."

But the hardest part, Umeda says, is thinking about the day she has to tell Saida the truth.

For now, she just wants her daughter to enjoy her childhood. But she fears that someone might blurt out the secret to Saida. A top student at school, Saida is a popular girl and has many friends. Umeda fears that she would be ostracized by her peers if they found out.

Umeda tries not to think about the long term -- whether Saida will be able to have her own children, for example. For now she clings to the hope that a cure will be found by the time her daughter reaches that stage in her life.

Written by Farangis Najibullah based on reports by RFE/RL's Uzbek Service correspondent Mekhribon Bekieva