Giving the will to live

[Guest guest]

Giving the will to live

MADHU GURUNG

The Naz Foundation believes HIV-positive children have as much right to life, love and care as anybody else.

Restoring childhood to children: Anjali Gopalan

It was a bright summer morning when Anjali Gopalan, the Director of NAZ Foundation walked up to her office. At the OPD, Anjali recalls, "I saw a young boy around five sitting alone. He was thin and nervous. He had been left there by his uncle w ho was a lawyer. We realised he had been abandoned as his parents had died of AIDS and he himself was HIV positive. When I started NAZ (which means Pride) in 1994, I did know that care for people with HIV/AIDS would be a vital issue, but I had never imagined we would start a home for HIV-positive children."

Today, Vijay (not his real name) is 12, and Anjali says with the pride of a mother, "He is turning into a handsome young man." A die hard fan of the first Indian idol, Abhijeet Sawant, Vijay hopes he can emulate the success of his icon. What Vijay may never know is he was instrumental in starting a home that envelopes young HIV-positive orphans like him with love and care.

Widowed with no family of her own, Anjali admits that the NAZ Foundation is her heart and soul. The building that houses the Foundation was built from the money her doctor brother, who succumbed to cancer, left her. While the basement houses the office, the first floor is their OPD clinic and the two floors above house the children. "We have 35 children and it's overloaded. With the exception of two, the rest of them are all HIV positive. We also have three HIV positive women who have nowhere to go. We have started turning people away and it's giving me sleepless nights, because I know the children we turn away stand no chance elsewhere."

In 1985, Anjali began working in the US with an NGO, documenting migrant labour community from Haiti and Latin America where HIV was already an issue. In 1994 Anjali returned to India to start the NAZ Foundation. Changing focus

Today NAZ is doing programmes with young college children and talking about women's sexual health. Yet another pilot programme links sports with empowerment for young people in the 12-19 age group. They also do a home-based care programme which has a team consisting of a doctor, nurse and counsellor, visiting people with HIV in their homes. "Thankfully the Government is providing first line anti retroviral therapy (ART) drugs to people with HIV. However, government support has been a mixed bag. Till recently no one spoke of children with HIV. In India children are marginalised. They don't have a childhood other children all over the world take as their birthright."

A National AIDS Control Organisation Report of 2004 estimates that the total number of HIV positive population of India was 5.134 million. The number of children with HIV is not known. Anjali admits that children with HIV get further stigmatised as there are very few systems in place to deal with them. "Once we began looking at donors to fund institutional care, we faced our first stumbling block. The donors said communities must respond." Anjali points out that very often when people think of institutional care, they imagine a dark, dinghy space set in an abusive environment. She and her team were determined that their home for HIV Positive children would not just be about light and space, but would have the loving environment of a home where children would be able to sing, dance, go to play, see movies, even have a holiday in the hills. "What we learnt is that we have a beautiful country where people take care of each other, and it's mostly the poor people who open up their hearts. There is a small Kirana shop in Yusuf Sarai from where we get our monthly rations. The man sells it to us on a wholesale rate, and every month he hands me Rs. 1000 as donation towards the home."

The Care Home and the OPD is financed by and the last two years and Anjali hopes that they will continue with their support.

We walk up the stairs, amidst riotous greetings the children stumble out, rambunctious and open in their affection. A small girl laughs in merriment and hugs me. I hug her back and her pretty dark eyes twinkle in delight. "You should have seen Mohini (not her real name) when she came. She was malnourished and her entire bottoms were lacerated because she had never been picked up. Her grandfather would throw a roti and that was all she got to eat. Her parents had died of AIDS and she was HIV positive. Everyone wanted her to die. Now look at her." Mohini squeals in delight as I hug her closer, a minute later she is running after her friend.

The elder lot from 10-14 plus age group are busy with their homework. Those who have finished crowd around two computers playing games and creating their own paintings as screen savers. It's this age group to whom Anjali admits they recently disclosed their HIV status. "We did a number of sessions with them about the body, the stigma attached to HIV and other things. The night before I was to tell them I could not sleep. Their reaction was an anti climax. They heard me out and said, `Ok, you are there, no?' " Societal initiatives

Anjali believes that people should come together to demand and get their dues. She points out that while the government has provided the first line of ART, the second line drugs, which are expensive, have yet to be given out by the government, as it leaves the poor with little medical help as the disease progresses. "These drugs are manufactured in our country but are not given out free by the government. They cost anything between Rs. 8000 to Rs. 15,000 every month. We have to look at HIV care in continuum and that has not yet happened in our country."

Anjali admits that she does not know what the future holds for the children. The NAZ Foundation is one of its kind in the country. There are other foundations that work with children with HIV but their set ups are different. Anjali agrees there is an urgent need for more organisations to take on similar schemes for HIV-positive children. "People say I should stick to advocacy for, after all, a home of only 30 children is just a drop in the ocean. I tell them, they are not 30 children but 35 of them who never stood a chance anywhere else. They are 35 souls saved. With new drugs people are living longer. I am determined to give them love, security and a value-based education so that they can blossom and live long enough to give back to society."

http://www.hindu.com/mag/2007/11/04/stories/2007110450120400.htm