CHENNAI: Girls run down the stairs, dressed in colourful clothes, to welcome Latha Krishna. Once all the eight girls are seated on the floor in the living room, Latha distributes dresses to them for Diwali. They hold the clothes to their bodies and thank Latha with wide smiles.
These girls are the residents of Ark India Service Society near Perungudi, an orphanage for girls born with HIV. The orphanage, run by home manager Priya Darshini and director Jerome Selvaraj, houses 10 permanent care and 10 temporary care HIV+ girls.
“These children’s parents died from HIV, and they were taken in by another family member, usually their grandparents. But, they don’t understand the disease. They don’t give them medicines properly and don’t make nutritious food for the children,” explained Priya, who started the Society with Jerome five years ago. Most of the children come from places like Cuddalore and Villupuram, and Jerome and Priya identify critical children and take them in. Despite the government providing `1,000 per month for these children for their food and providing free medication, Jerome and Priya feel that the money is not used for its original purpose.
To maintain the orphanage and care for the girls, Ark requires `1,81,000 per month. Through donations from Jerome and Priya’s families and friends, as well as the 10-12 regular donors who contribute `3,000-`5,000 per month, they cover around `80,000. The rest of the money, however, is paid through Jerome and Priya’s personal savings. Jerome explained that he and Priya forgo their salary some months.
“Once, a health officer visited our house to make sure the girls were okay. We asked one of the girls to give him a cup of coffee.
He looked at the coffee, then at the girl, and asked us if she was HIV+. When we said yes, he refused to take the coffee. These are the kind of educated illiterates in our country,” averred Jerome. It was difficult for him to find a place that will house the children, as most house-owners immediately rejected him when he explained the girls’ condition to them. The house-owners and neighbours in their current location do not know that the girls are HIV+, and they work hard to hide the fact, fearing for the girls’ safety.
One in four pediatric HIV transmissions occur vertically, from mother to child, during the pre-, ante- and post-natal period. The child is especially at risk during childbirth when the HIV+ mother is straining herself, breastfeeding, and in the last few weeks of the third trimester, specifically the 34th week onwards. While white mouth ulcers, recurrent diarrhea, recurrent pneumonia, and lack of weight gain are common symptoms, Dr S Srinivasan, the State Health Coordinator and registrar of ICH, said, “Some children, due to the nervous system being affected, suffer from behaviour disorders like attention deficiency, cognitive issues and delayed developmental disorders.
In addition, with orphans, we can see a difference in their behaviour when compared to children who have their mothers around. When there is no mother present, there is more psychological disturbance.” He added that nutrition is vital for a HIV+ child. With Antiretroviral Therapy, being popular and effective in Tamil Nadu, he also recommends that all HIV+ children are vaccinated with inactive vaccines, as they are at a higher risk due to their condition. Going to the hospital is a difficult task for the children, said Priya. As they are surrounded by patients in the Intensive Care Ward and tuberculosis patients, the girls feel anxious and helpless.
However, it seems as though dancing is a favourite stress-buster at Ark Society. Hooking up Jerome’s phone to a speaker, the girls dance during their free time. “My favourite songs to dance to are sad and kuthu songs,” said 13-year-old Kousalya*, a class 7 student who dreams of becoming an IPS officer. Swetha*, a 23-year-old, the oldest member of the house, agrees, adding that the infectious laughter in the house and close contact with the girls always lifts her spirits.
“Their parents passed away from HIV, and they sometimes think that they could die too. But, I always encourage the girls to speak to me about it. We tell them that as long as they take their medication and remain healthy, they will be fine. I regularly counsel the girls, so that they express whatever is on their minds,” said Priya, adding that she encourages them to focus on school so that they are empowered enough to follow their dreams.
Though some of the girls are born with HIV, some, like Swetha, did not test positive at birth. Her reason remains undisclosed, and Priya and Jerome said they do not stress upon the girls to reveal anything they are not comfortable with. Younger residents are aware that they have a condition that requires medical attention, but have not grasped the serious implications.
“I want to enter NGO work later on, to help children like me. Many of them suffer in their villages and homes. If I can help them from when they are young, they can go and live lives that
are fulfilling and happy,” said Swetha.
*Names changed on request