A life ahead (HIV/AIDS)
By Maite Garmendia
“I can live like a normal girl.” These are the words of a 12-year old girl, María*, who has been living in Hospice San José in San Lucas Sacatepéquez for HIV/AIDS infected patients.
“I normally get up at 5 in the morning -not now because we are on school vacation, take a shower and get dressed. I spend all morning at school from 7:30 to 12:00. When I come back here, we have lunch, do the homework and, if we finish early, go for a walk or play”, says María to show that her life is in fact like that of any other girl her age.
However, her family is not made up of a father, a mother and several siblings. Her family is more extended: 37 children, 10 adults and the whole centre staff, all of them living together.
Her arrival in Hospice San José
María arrived in the hospice seven years ago. “I came by car but I am not quite sure”, she indicates. But she surely remembers that she didn’t feel comfortable in the beginning. “I could not get used to the place because I was one of three girls here and the rest were adults. It didn’t look as it does today, a place full of children.”
She adapted gradually to life in Hospice San José, the home where she has grown up because her family refused to take care of her. “Most children are abandoned or orphans sent to us mainly by courts and hospitals”, indicates Helena Clavijo, the director of the Hospice running contributions from the Ministry of Health and private donations.
As to María’s specific case, her mother is dead and she has only seen her father twice in seven years, the time she has remained in the Hospice, and it was a mother-child transmission. “This is the usual form of infection for children in the centre”, indicates Clavijo.
In an effort to prevent mother-child transmission, the United Nations Children’s Fund (UNICEF) has funded since 2002 a programme in the Roosevelt Hospital for the detection of HIV/AIDS in pregnant women, which will prevent their offspring from being infected.
Protection against discrimination
María is somewhat shy and speaks very softly. Although she does not say it openly, it is easily perceived that she is aware of her sero-positive condition, which even today is often synonymous to discrimination. She learned she was an HIV/AIDS carrier a couple of years ago and, once she understood the implications, she knew that not everybody would empathize with her situation.
For instance, none of her school friends know that Hospice San José is her home. “I tell them that I live with my family”. “Let’s go to your house”, her friends say, but María always finds an excuse to dissuade them.
The Hospice director points out that the situation is “a double-edged sword”. On one side, explains Clavijo, they are told that with special treatment and antiretroviral medication they can live a normal life, like other children their age. On the other, the situation gradually takes a turn for the worse, as children begin to realize how hard it is to find a school for them or that only the directors of the education centre but not their classmates area aware of their HIV/AIDS condition.
What María’s school friends actually know is that she wants to be a model. “That is my dream”, she says. Leaving her shyness aside, she talks about the modelling course she recently attended. “During school vacation I went to a modelling academy for two weeks, Monday thru’ Friday. It was a summer course”, she adds. With a smile on her face, she explains that she has learned how to put on make up, walk straight and with cadence, take care of her skin, and “a few other things”.
When asked what would she like to be doing or what does she see herself doing ten years from now, she answers “I don’t know”. But María certainly knows that she has a life ahead and several goals to reach: “I want to continue with my studies but what I like most is sciences. I also want to continue with my modelling”.