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L’il heroes

Many HIV positive children are living precarious lives without
their parents as they are either orphans or were abandoned. A look into how they are coping with the strict medical regimen

“Catch,” says Ashna, while playing with her favourite ball in the park. Her game gets interrupted when she is asked to come inside for her medication. The wide smile on her face changes into a grimace. “Who likes taking medicines every day? Medicines are bad,” she says in her naivety.

Just eight years old and HIV positive, Ashna was abandoned on the streets by her mother, like many other children in India who are HIV positive.

Such children, and those who are orphans, are society’s most vulnerable citizens. Even though, several NGOs are working for their betterment, a large number of these children suffer from depressive symptoms and are unable to lead a normal life because of the stigma and discrimination they face.
Even when they transition from childhood to adulthood, life is never easy for them. Their psyche is deeply affected by their illness.

“It is not an easy task to look after such children. It is not just about the health issues, but many suffer from emotional and behavioural problems.

There are child counsellors to help them cope with the stress and to make them understand that they are just like any other child, we also impart awareness on their HIV positive status and the precautions that they are supposed to take,” says Ravinder Kumar, a caretaker at Delhi-based NGO Naaz that works for these kids.

Psychological and social factors hamper their ability to deal with the stress. The children have to go through monthly check-ups. X-rays, viral load and other blood tests are also conducted routinely. Ravi, a 10-year-old HIV positive boy who lost his mother to AIDS, seems fully aware of his illness. He says, “My tests are scheduled for November 20. I try to remember the dates because I prepare myself.”

Kajal, a 6-year-old, says she still is fearful of these tests. “I don’t like it when they take out my blood. Getting needles pierced every month is dreadful. I wish I could do without these tests and medicines,” she says. Kajal loves her doll and she takes it with her for every test. “I don’t have my parents to support me so she (the doll) takes care of me when I feel scared,” she says with a smile.

“It is not easy to convince Kajal to go for the tests. She really feels scared of the needles, but eventually they all get used to it. It becomes a part of their lives,” says Kumar. Kajal was abandoned by her parents when they found out about her condition. This is how many children land up in such NGOs as societal pressure and the stigma makes their parent abandon them to a life of misery.

A small proportion of these HIV positive kids are infected by contaminated needles and unsafe blood transfusion, but mother to child transmission of HIV is by far the most significant route of transmission in children less than 15 years. Since the anti-retroviral drugs are strong, some children suffer side-effects like delayed physical and mental development, loss of hearing and vision and blackened teeth.

There are 3.2 million children younger than 15 years living with HIV worldwide. The Indian government has estimated that 3.5% of the 2.5 million HIV positive individuals are children below 15 years of age (The World Bank speakers bureau says, in India, the rate of perinatal transmission of HIV is 5.7%, with approximately 23,000 newly born HIV infected children annually (NACO Annual Report, 2013).

There are children who are too young to understand the disease they are suffering from and find it hard to cope with the routine tests. “Some understand it well, but others are not well aware of their ailment. The most important thing is to make them realise that they are no different from the other children, while making them understand the precautions that need to be taken,” says Saroj Dubey, a nurse who takes care of such HIV positive kids.

Joy is an 11-year-old who was found on the streets, most probably abandoned by his parents. “I don’t know if my parents left me because of my disease. But I am happy the way I am. I live each day to the fullest and I realise the value of life,” he says. His strength can surely inspire anyone.

Since the anti-retroviral drugs are strong, some children suffer side-effects, like delayed physical and mental development, loss of hearing and vision, and blackened teeth. Bhairvi, a 7-year-old, can’t see properly. The drugs have affected her vision, making life more difficult for her. She sits in a corner quietly and does not talk much to anyone. But she has a best friend, who she loves talking to — 9-year-old Kashish.

But he has not been well since the past few weeks. His body has become frail and he looks extremely weak. He loves playing cricket but he hasn’t been able to play the sport since he gets tired very easily these days. “Tests are being conducted to understand the problem. His immunity has reduced significantly. It is not easy for these children to face such situations in life without their parents,” says Kumar.