Strong and bright

Published Date : 30 Nov, 2013
Description :

KATHMANDU: What Babin lacks is size — being of smaller than his age’s normal size making him angry with himself because he “loves and wants a body like that of Bollywood actor John Abraham”. Though he may be small for his 11 years, the thing he lacks in, he makes up for with his confidence as he accepts that he lives with HIV.

“If you take medicine regularly, you will live like a normal person,” says Babin who once almost lost his life as he stopped taking antiretroviral (ARV) drugs. The fifth-grader acquired HIV from his parents — his mother died when Babin was five/six years old and his father passed away a few years ago. He was also diagnosed with HIV when his father had a check-up and “I started taking medicine since then”.

But the young boy did not know what the medicine was for as he “used to throw it away”. As such he had to be hospitalised and blood transfusion was required. And for the first time he knew about his condition.

“It was then,” Babin speaks with a sigh and after a long silence, he continues, “It was then I was told that I had HIV. It was then I knew it was incurable.” It was difficult for a young child to accept the truth — he was scared. This fear was further elevated by social stigma and rejection by his step-mother, who kicked him out.

But if you meet him today, you won’t feel he is someone living with HIV. He is healthy and lively with a big dream for a beautiful future. He lives together with other children like him in a hostel of Punarbal Plus — an organisation that has been providing education, care and shelter to children infected and affected by HIV/ AIDs. The counselling, care and education has helped him grow a lot.

Most of the children there share similar stories like his — after passing through hardships and facing social stigma, they now are living a happy life while dreaming to become important members of society shouldering responsibilities.

Double orphans

“Mother I am doing good. I have been taking medicine regularly as ARV is available easily. The hospital is near and I am taken care of properly. If only there had been proper medication when you were sick, you wouldn’t have died so soon …”

These are the words that most children at Punarbal Plus wanted to tell their mother on Mother’s Day. They jotted them in a letter because they missed their mothers. But it is not only mother, they miss their fathers too — all have lost their parents to HIV/AIDS — they all are double orphans.

The time spent with their parents, their love and affection often haunt these children. “I often remember my parents in the night — especially mother,” 13-year-old Bikash says as he remembers the days with his parents. And he sometimes regrets leaving his mother behind after the death of his father to work in India. He would send money home working in a tea shop in India as his family’s economic condition was very poor. One day he got a message saying that his mother was seriously ill. Unfortunately, by the time he reached home, his mother had passed away. “Even today the thought — if I hadn’t left my mother, I could have seen her face in her last days — often crosses my mind.”

Life became hell for him after this — he became the head of his family with responsibility of looking after a seven-year-old brother and five-year-old sister. Though his aunt would provide food, these siblings were not allowed to enter her home. There were rumours that his mum passed away due to AIDS. “Thus, our aunt had a fear that her children might get the disease.” Their saviour was his mother’s sister who took Bikash’s brother to hospital after his whole body was swollen. His brother was admitted for 13 days and all three siblings had a check-up. While the two brothers turned out to be positive, the youngest sister was negative.

Now all three live at Punarbal Plus and Bikash though just 13 is a very responsible brother. “My brother wants to become a doctor, while sister wishes to be a nurse. I will fulfil their dream at any cost,” he says like an adult.

The demise of both her parents made life of 11-year-old Kripa very difficult — born in India, she lost father and mother to AIDS. Kripa, just five years then, too was diagnosed with HIV and later she had tubercluosis. The only hope of her life was her grandmother. She returned to her home in Nepalgunj with her grandmother but both of them were rejected by Kripa’s aunt. And Kripa suffered discrimination in school too. “Other children would not touch or play with me saying that I would transmit the diseases.” A year back, her grandmother brought Kripa to Punarbal Plus and she feels being in a “different and happy world that welcomes me rather than discriminating”.

Though Sunita, 13, hasn’t faced much stigma for living with HIV, the loss of parents always affects her. She lost her father 12 year ago and it has been around six years that her mother too passed away — both due to HIV/AIDS. She suffered from herpes zoster for a month. “I almost died and there was no one to look after me except my brother and sister,” reveals Sunita, who became better after 14 injections and 15-day long stay in the hospital. It was at the hospital she knew about her condition of being HIV positive.

Anish is another person who got HIV, courtesy his parents. “My father passed away from AIDS,” shares Anish who stayed with his father’s sister after his death as his mother left for Qatar after that. During his stay there, he became sick and when the blood test was conducted, the result was positive. It has been four years; Anish has been taking ARV to combat the condition that makes him angry often. “I often think why did I get HIV and at times I become very angry with my dad.”

An estimated 4,500 children in Nepal are HIV infected and affected, as per a data by National Association of People Living With HIV/AIDS (NAPN) informs Apsara Karki, Programme Director of Punarbal Plus and there are 27 of them residing at Punarbal Plus — all of them being double orphans.

Brighter dreams

These children often suffer from opportunity infections like diarrhoea, common cold, scabies and so on. Special care is a must during such times along with providing good nutrition. While caretakers at the hostel do their part, these children are regularly subjected to counselling sessions.

As such these children have become bright, smart and very careful. Some have been taking ARV drugs everyday at 8:00 am and 8:00 pm and they don’t need anyone to remind them. They are at school as studious students.

The most important thing is that they don’t let the fear of being HIV positive wane their dream. Bikash has a dream of flying high in his “flying car that would throw fire instead of smoke”.

Like Bikash, everyone has brighter dreams as they know “if medicine is taken regularly, a HIV positive can live like a normal person’s life and age”. But they at times fear being criticised when the world knows their identity. “The most difficult thing is that people could tease me if they knew I am HIV positive,” says Babin who hasn’t revealed his condition to the neighbours in his village in Udayapur. But one day he wants to end the stigma from this world by becoming a doctor. Kripa and Sunita too dream of the same.

And Anish, who wants to work to repair computers and mobiles, also wishes making a medicine that could cure HIV/AIDS completely.

Their world may not be that bright, but it is their confidence and optimism that has made it shine. “Don’t think that we would die instantly. We can not only live like normal beings but can do as good as them,” says Sunita.

“But these are only a few children who have got such an opportunity. Many are still living a very difficult life, so the government must address their problems,” expresses Karki further revealing that even her organisaiton lacks fund providers.

(The names of all the children interviewed have been changed on request)

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