The unfortunate children in Gan Sabra home represent the millions of children whose lives have been thrown into chaos by the devastating effects of HIV/AIDS. But they're real children with real stories. Each child has a different story, and all are difficult ….writes Ngathingkhui Jagoi
Little Jessica would cuddle Lucy Maruati’s lap coyly when she was photographed, her angelic eyes flicking at the photographer. Lucy is not her mother. She is just her caretaker but Jessica calls her ‘Mom’. Not only for Jessica, but this unmarried lady is a ‘BIG MOM’ for all the 20 children, (12 girls and 8 boys) in the Children Home called “Gan Sabra’. Most of the children in the home have lost their parents.
Entering their home, it is heart breaking to hear and witness these lives. The children live as brothers and sisters of a big family. It is just an incredible experience to watch these children laugh; smile and sing out so loud for you and, show you around their beds. They welcome you into their homes with pride and dignity.
These unfortunate children in Gan Sabra home represent the millions of children whose lives have been thrown into chaos by the devastating effects of HIV/AIDS. But they're real children with real stories. Each child has a different story, and all are difficult.
Here is a story of a girl: Let’s call this girl Thapuii. Thapuii (14), the senior most among the inmates has her story to tell the world. Thapuii lost her father to AIDS and she is also HIV positive. She becomes reflective and traumatized when she recalls the days before she was taken in the Gan Sabra. As a little girl she has experienced rough weathers growing up in a broken home. Her parents both drug users, divorced followed by the death of her father in Churachandpur district of Manipur. Her mother remarried but the step father, who was also a drug user died too. Her mother who is always on the hunt for her dose of drugs seldom stays at home.
In her new home, circumstances compelled Thapuii to discontinue her studies and work in the field with her step-grandma or work at home. Thinking about her uncertain future brought sadness in the minds of this teenager who has grown up all too soon. However, today she has a family, the Gan Sabra family. “This is my family. I go to school and love studying,” Thapuii attended school after a gap of three years. Despite the challenges, she has dreams of becoming somebody someday.
Sharon is another girl. Her dad died, and her mom shortly afterwards. She was terminally ill that time, and doctors lost hope about her. Since there was nobody to look after this poor child, she was taken into the Home in March 2006. “Doctors then said that she would not live for two weeks. But today she is hale and healthy,” Lucy says.
John, the youngest among the inmates of Gan Sabra was born on December 19, 2010 at 4:pm. He was admitted to the home the same day after his mother expressed her inability to take him. “She is so poor and she has got to support a 1 year old boy by weaving inspite of her ill health,” Lucy says as she weans the baby boy sleeping soundly in the cradle.
Lucy intends to locate the nearest kit and kin or relatives of the children and return to them after proper counseling or if not, give them away for legal adoption. However, many of the children despise the idea of parting from the home for certain reasons. “I love my mom but I don’t want to go back to her or to any of my relatives. If I go back, I’ll not study again,” Thapuii says.
The same case is with Rose, Sharon, and all the children in Gan Sabra. They want to go to school and share their stories one day at a time. Till today, 2 children have gone for legal adoption – 1 in Champhai district of Mizoram and, another in Delhi.
The children home, christened ‘Gan Sabra’ - meaning ‘Garden of Cactus’ in Hebrew, is a special home for orphans affected with HIV/AIDS or children suffering from terminal diseases located at Zonuam village on the outskirts of the Mizoram's capital Aizawl. Like the like the cactus that survives in the desert, children infected and affected with HIV/AIDS, survive in the midst of the discrimination, stigma and various problems. However, she believes that there is life beyond HIV-AIDS and every child has a right to cherish childhood in a world full of love. “I want to see that they have a home and smile. That’s why we are trying to provide them a family atmosphere in this home which is what they need. They will survive and like people coming to drink the juice of the cactus in the desert, one day these children will serve the thirsty people,” Lucy, the founder of Gan Sabra says.
But how was the home started? Gan Sabra has its own short history. Lucy, who was formerly a nun, visited care centre run by a religious group way back in 2004. Moved by the pitiful condition of these children of the lesser God suffering from HIV/AIDS, she decided to open a home in 2006. Thus she took Jessica who was left abandoned by her HIV/AIDS mother. Soon the social welfare department of Mizoram requested her to take in children with terminal diseases and, the number of children began to grow.
Since its inception in 2006, 50 children who are either terminally ill or affected with HIV/AIDS have been admitted in 'Gan Sabra' and 3 children have died so far. The home has been helping the HIV/AIDS infected children to lead a normal life through education, healthcare and most of all love. Among the 20 children living in the home presently, 11 are HIV/AIDS positive and 7 of them are on ART.
Initially the children at 'Gan Sabra' encountered problems at schools due to opposition of guardians. However, with the help of various counseling programmes, parents started to accept the HIV positive children. Today most of the children attend schools and get excellent results. They are also club members of the children’s club of the locality.
"I believe that it is important to support not only the obvious medical needs of children who have been affected by HIV/AIDS, but to find love and care and address some of the emotional issues," says Lucy. And she has aptly written on the wall inside the home – ‘There may be limitations for cure but not for love and care’.
Though the Gan Sabra is run by donations with two helpers till date, the home is supporting positive mothers in Kolasib district with nutritional food. Besides, it also undertakes advocacy and arranges awareness workshops and campaigns on prevention of AIDS on a regular basis. Apart from the burden of running the Home, Lucy is contemplating to start a day care centre for children of single parents shortly.
Mention may be made here that Mizoram has a record of 5312 HIV/AIDS positive people till October 2010 since 1990 when the first HIV/AIDS case was detected in the state. According to Mizoram state AIDS Control Society Extramarital and unprotected sex was the cause of the spread of HIV in Mizoram, more than 67.86% of HIV/AIDS cases detected during 2010 were infected through sexual contacts. Out of the 35,636 blood samples tested last year, 1223 people were tested positive, of which 830 people contacted the virus through unprotected sex. 348 new detections were infected through intravenous drug use and 25 of them (children) through their mothers.
“If we see the numbers of HIV/AIDS cases, it is still small, but when we calculate the percentage, Mizoram may be sitting on the high voltage of HIV,” says Lucy.
On the other hand, adding to the woes of the prevailing situation of HIV/AIDS pandemic, absence of PCR machine in Mizoram has made testing of HIV a hapless and life costing affair. “We have to wait 18 months for the test result. If the machine is here, we should be getting the result in two months time and start ART and thus save lives,” she maintains.
“In the face of the HIV/AIDS endemic, many people only have a casual awareness of AIDS. Even faith groups with HIV/AIDS ministries tend to equate the AIDS pandemic as the leprosy in the scripture. But Jesus went into the village and touched the lepers. He didn't stand aside and say, 'You're healed’,” LR Sailo, press secretary to Mizoram chief minister says.
Lucy didn’t preach. She lives with the HIV/AIDS affected children, washes their clothes and eat with them. And the stories of these brave children of the lesser God in Gan Sabra Home, or for that matter, the new face of AIDS around the world would now have the opportunity to tell their stories someday.
(Names of all children in the story have been changed)
*The writer can be contacted at njagoi@yahoo.com
