Every hospital she turned to shut its doors on her. As the helplessness of her situation sank in, a traumatised Kamlabai—seven months pregnant—miscarried. Today, her only hope is Diya, a voluntary organisation that has taken the seriously ill, malnourished Sangrakshit under its care.
Diya, part of the Freedom Foundation, was inaugurated on Children’s Day this year and is one of the first centres in the country dealing with specialised care for children with AIDS. The foundation has been running care facilities for HIV-positive patients, including children, since 1993 in Bangalore and Hyderabad but they felt there was an urgent need for a specialised care centre for the young ones, hence Diya. Says executive trustee Karl Sequeira, "Our experience has shown that these children have physical, emotional and infrastructural needs that are very different from what adult patients require."
Diya can take care of up to 30 children but only houses about half the number now, with ages ranging from 11 years to just a few months old. Except for two, the rest are all orphans, abandoned by their relatives. "These kids have undergone tremendous trauma. They’ve lost parents and siblings and have been shunted around by relatives who don’t want them. Physically, most of them are in bad shape, susceptible to all kinds of infections. They are already all too familiar with oxygen masks and needle jabs," says Sequeira. Diya’s objective, he says, is to give these children a place to call home and make whatever little time they have left as happy and comfortable as possible.
Diya is a stone’s throw away from the gloomy, overcrowded room in the main centre, which the children once shared with the other hiv patients. And though it’s only a week or so since they moved in, the children are already showing marked improvements—the new facility is bright, airy, spacious and has a small playground attached to it. More than the environment, it’s probably the dedicated care-givers who are making the biggest difference to their lives. Diya also has a full-time child psychologist, Zakia Banu, to help the children exorcise their traumas through music, art and play. Banu’s duties don’t end there. She, along with the nutritionist, doctors and nurses assigned to take care of the children, also doubles up as teacher.
In Andhra Pradesh alone, there are about four lakh aids-infected people. With an average two per cent pregnant women testing hiv positive, providing proper care is becoming critical. A few can afford private help, but the vast majority usually having nowhere to go. Most government hospitals are still reluctant to admit them, either due to staff prejudices or chronic overcrowding problems. The government is currently supporting 11 centres in the state dedicated to looking after aids patients. It provides funds for 10 beds at each centre, but for institutions like the Freedom Foundation (it has 49 patients now, including 16 children), the money doesn’t go far.
Sequeira claims that despite the funds paucity, the foundation decided to pool in its extra resources and whatever donations it could manage into making Diya a reality. "With the average lifespan of an hiv-positive child ranging between 8-10 years, taking care of these children is not a happy job...but they are so vulnerable and helpless, they deserve the best we can give them," he says. To find out more, contact ‘Diya’, HIV/AIDS Centre, 21, Cariappa Road, Bolarum, Secunderabad 500010. Ph: 040-7862148/ 7865530; email: freedomfoundation1@rediffmail.com