Climbing the wall of prejudice: HIV positive children need loads of love and support to deal with their own status and with prejudice. Credit: Mercedes Sayagues

One day Rukiya came home from school crying, sobbing that she didn’t want to go there again.

“What happened?” asked her mom.

“Abana bagaba kusomelo nti nina silimu ate ntinda bika bubbi nyo era ngenda kuffa esawa yona era negamba nze silina kuba kusomero nina kubawaka effe bulungi,” said Rukiya.

“The children say I have AIDS, I look very bad and I will be dying soon and I don’t need to be at school, I should stay at home and die.”

Rukiya is five years old and was born with HIV. Her mom didn’t know they were both HIV positive until Rukiya got very sick at age two. Both mother, father and daughter have been on antiretroviral therapy ever since. They live in Kampala, Uganda.

I’m like Rukiya’s second mom, so her alarmed mother called me. I was busy at work but realized that Rukiya needed me more than my office and went to their home.

Rukiya told me what happened and she asked me to tell her the truth,  just me and her.

I didn’t know what to do. First I sat with the mother, just me and her. I asked if it was Ok for Rukiya to know the truth. The mother felt the child had the right to know, like any person living with HIV. We both thought she suspected or already knew what her daily pills were for.

So I told Rukiya she is HIV-positive like me and her mom. I explained that I have lived with HIV for ten years, double her age, and I am going to live for many more because I love myself the way I am.

“Mommy Jackie,” she said. “Wana ngeda kuffa mangu nyo oba nage neganda kubera nga gwe niyye eyonyi?”

“Is it true that I am going to die soon or will I live and be like you and travel like you?”

“You will live only if you love yourself, take good care of yourself and take your medicines without missing a day,” I replied.

“Is HIV the reason why I am taking these pills?” she asked.

“Yes,” we said.

Strong girl

I write this on one page but the process took us the whole day. Then it took two weeks of counselling, with loads of support, care and love we showed Rukiya, before she managed to go back to school without fear.

She looked happy and ready to start a new life with her known HIV status.

It gives me joy that she is such a strong girl who can handle a difficult situation.

Uganda has a policy that does not allow disclosing their HIV status to a child who is under 13 years old. For children with little or no support, this may be best. I would not disclose to children who don’t have the kind of strong family support Rukiya has.

But we decided to tell her because we felt she already knew the truth. We did not want her to hurt her further with a lie.

We started taking our medicines the three of us together, so she would feel she is not alone.

Recently I asked her what she wanted to do when she grew up.

“I want to be the first woman pilot in Uganda because when mummy Jackie tells me about her travels, it makes me feel like travelling everyday and every year,” she replied.

I smiled and hugged her.  She is OK. We are OK. It was the right decision to tell her she lives with HIV.

Rukiya is now seven, healthy and doing well at school.

In my next blog I will tell you how it happened that I became Rukiya’s second mum.

Jacquelyne Alesi is a wife, mother, daughter, HIV activist and Programme Director at the Uganda Network of Young People Living with HIV/AIDS, an organization that since 2003 works to improve the quality of life for HIV-positive youth in Uganda.