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Fast facts

67 million children

Were not attending primary school in 2011, 53 per cent girls.

“It’s time to stop being angry and desperate, and to just start living.”

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01 December 2018
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Anya, 14 years old, Tashkent

I had a mother. She was sick with diabetes, but my dad was healthy. However, when I was born, he left us. I would get ill very often and my mother would frequently take me to hospitals. Most likely it was then that I received the medical treatment that infected me with HIV.

My mother died in 2015, and my brother and I were sent to the Mehribonlik Home No. 23. My brother is one year older than me. When they discovered that I was sick, they referred me to a hospital. It was on April 16, 2015 that we learned about my illness. I was in the hospital for three months, and I was prescribed ARV therapy.

Later, my grandmother took us to live with her, my brother from the orphanage, and me from the hospital. We went to study in a regular school. When my grandmother found out that I had HIV, she had a mild heart attack. I had to switch to home schooling, because I kept feeling weak; I would fall asleep at school during classes and would get told off. As of September, I will start going to school again.

My brother knows about my illness, but he doesn’t care. After the death of my mother, our relationship got worse. He told me: "You have to take care of yourself." To which I answered: "Alright, I’ll do everything on my own, but just don’t bother me."

It was only at the UNICEF training that I began to understand about my illness. I enjoyed meeting with people like me; children living with HIV lack companionship but you can find friends in your peer group, and in the future – your other half. I can’t make friends with healthy people, they avoid me. Among classmates, too, friendships are difficult because they might spill the beans about my HIV status to others.

The most difficult thing is getting used to taking medicine at specific times of the day. I have experienced a lot of negative emotions since I learned about my illness. I was angry with my mother for dying. I was angry with my father for leaving us. I was angry with the doctors for finding the infection in me but not prescribing ARV therapy. At the training, I realized that it’s time to stop being angry and desperate, and to just start living.

Marina Andreevna, Anya's grandmother

Three years ago, after the death of my daughter from diabetes complications, her children found themselves in a children's institution, or "Mekhribonlik Home". It turned out that my granddaughter is HIV-positive. In the hospital, they arranged the treatment regimen for the girl and after that, I took the child home. She was assigned to a dispensary register and prescribed ARV therapy, a special treatment for HIV infection but my granddaughter couldn’t understand where she got this disease, or why she should take medicines every day. She was only 10 years old.

Anya had psychological breakdowns. For example, after the 2018 New Year celebrations she tore up all her school notebooks. She couldn’t sit through all her classes at school, so I transferred her to home schooling.

We have been very much helped by the support of kind people, mainly doctors. At school it’s a little difficult, because children are different, and not everyone sympathises with people who they see as unhealthy. It was a psychologist at the polyclinic where we receive ARV medication who advised us to visit the Day Care Centre for Children and Families Affected by HIV in Tashkent. While we were there, we were invited to a training organized by UNICEF.

Previously, my granddaughter didn’t want to see anyone, but on Tuesday, for the first time in her life, she met with lots of HIV-positive peers. She was really affected by it! Her eyes lit up with an interest in life and I, too, felt happy just to look at her. Thanks to the training, my granddaughter and I have become friends. We’ve started to talk openly about the disease, and about the future. Fortunately, she has finally resigned herself to the fact that her illness is a lifestyle. We will make every effort to overcome the difficulties together.

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