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Wednesday, February 15, 2006
HIV+ 'miracle' children eking out a living
By Oluatoyin Alleyne

ohn and Tammy (not their real names) are considered 'miracle' children by many who have heard their story and witnessed the pathetic conditions under which they exist.

John is 12 years old while his sister, Tammy, is nine years old and given the opportunity they are a solider and a nurse in the making. But they may never realise their dreams as they are both HIV positive.

It is believed that they contracted the virus from their mother, who died three years ago. Though some observers doubt this was the route of transmission, because given the appalling conditions under which they exist they are prime targets for opportunistic infections. Their mother was in denial of her physical condition and never had the children tested.

But the head of the Non-Governmental Organisation (NGO) that has taken the children under its wings, said there is no other explanation for how the children could have contracted the virus. Asked if they could have been sexually molested, the woman said there was nothing to suggest this and neither has ever had a blood transfusion.

John is on anti-retroviral (ARV) therapy and has been for a number of years and it is expected that his sister may soon be placed on the drugs because her CD4 count is said to be low.

Dr Chuka Anude, Chief of Party of the local treatment service of the François-Xavier Bagnoud Center of the University of Medicine & Dentistry of New Jersey, which has deployed several doctors to administer treatment and care of HIV patients, has been seeing the children for a while now and calls them his "miracle" patients,

There are some 90 children in the treatment programme and 40 of them are on ARV therapy, the doctor said. And while John's and Tammy's situation is not unique, as many of the infected children are from very poor families, the doctor said they "are really suffering" and he hoped to help them beyond just administering treatment.

The children's "suffering" was evident to Stabroek News when this reporter visited the tumbledown shack they share with their 66-year-old grandmother and her sister. Their grandmother looks much older than her age and can scarcely take care of herself.

The shack, which leans to one side, has two doors but it is easy to enter without using either door.

The frail grandmother was lying in bed when this newspaper visited the home on a bright, sunny Sunday morning recently. It took her some amount of effort to get out of the bed, that was made up with a soiled, smelly sheet and with which she shared almost all of her personal effects.

The most noticeable thing on entering the house is the almost unbearable stench that permeates it. Incongruously, an almost brand new television set sits in one corner, blaring out a programme.

Settling on one of the three chairs in the house, the woman instructs John and Tammy to get their "work" done.

Tammy had not yet eaten breakfast, so she stood at the table, her hair in neat cornrows, and buttered two slices of bread while her grandmother spoke.

John, paying no attention to his grandmother, peeped over a makeshift wall that separates his grandmother's bed from the small outer room, to get a glimpse of the television set.

The children have always lived there. Their mother had built the shack, which is on leased land. After she died in 2003, their grandmother moved in the house and has been with them since. She said that some of their uncles and aunts help out, but there was no evidence of this.

There is no flooring in the house; parts of the sandy soil it is built on is covered with patchy pieces of vinolay.

There are several gaping holes in the roof and little pans at strategic points to catch water whenever it rains; one was on the makeshift bed that the grandmother's sister sleeps on.

The two beds the children sleep on are also covered with soiled sheets that look and smell as if they have not been washed for quite some time. Their clothes are either thrown around their beds or hanging on the makeshift wall that separates their beds from the kitchen.

No cooking goes on in the blackened, dirty, little space that serves as the kitchen, which houses some dirty looking utensils. The NGO provides food for the children three times per week and according to the grandmother one of her other granddaughters cooks for them on the other days. The grandmother's only visible means of income is the coals she sells to persons in the neighbourhood.

As she spoke to this reporter the old woman would lapse into long interludes of silence before snapping out of it and calling on her two grandchildren to get around to washing their clothes.

Because John is on ARVs he has the sympathy of many, according to the woman, and receives a number of gifts - the almost brand new television is one such gift. He then tries to prevent his sister from playing with his toys and watching the television.

The grandmother feels he could do more around the house, like sealing the leaks in the roof, instead of escaping to go and play with friends.

At a first glance, the children appear to be healthy but a closer look at them tells a different story, especially in John's case; there are some small sores on his foot, and both of their feet are blackened.

According to a volunteer from the NGO when they started helping the children their feet were being eaten by fleas that attacked them in their home, mainly because the house has no proper flooring and the fleas live in the sand. She said even the grandmother was attacked by the fleas, which not only ate her feet, but also her face. The small sores on their feet are suspected to be from the continued attacks by the fleas. Their toes are yellow and deformed.

The grandmother said Tammy's father lives in the same town but she does not know who John's father is.

Tammy said her father visits her from time to time. "He ask me if I want to go and live with he and I tell he yea, but tell me he go come fo me to spend some time, only to spend some time, but he never come back," she said.

One of the NGO's representatives said the children were not going to school when they found them because they were being taunted. She said many of their schoolmates knew the children's HIV status and made them targets because of it.

John says he knows he is ill and knows why he takes the tablets twice a day. The children have an older brother (their mother's first child) who lives with his father's relatives. John begged the NGO representative not tell his older brother about his condition.

When the children were found, according to the head of the NGO, John had tuberculosis and was emaciated. He was soon placed on ARVs and his condition improved within months.

The woman said the first time she saw the family was at a clinic, where the mother had taken the children. She said even though Tammy was way past infancy, her mother was still nursing her. She recalled that the mother's skin had broken out in sores, but when questioned she said she had diabetes.

She was taken to the hospital where, according to the NGO head, she was tested but she refused to accept the results, insisting that she only had diabetes. This was in 2000 and three years later the woman died leaving her two children behind. They were taken over by their grandmother, who according to the NGO head refused to allow anyone to take them even though there were some offerings from other relatives.

It was after the mother died and the children's condition deteriorated that the NGO was formed with the two children being its first clients.

Because the funding it receives from international agencies does not include provision for food, the NGO can only provide food three times per week, as it has several orphans and vulnerable children to assist. While it is attempting to improve John and Tammy's living conditions, the NGO is a long way off the mark. The children are in dire need of assistance, with the priorities being proper shelter and nutrition as well as other care.

And while Dr Anude knows someone who is willing to build a home for the children there is the issue of land. He says he does not want the house to be built on the leased land in order to avoid any problems. He is hoping that someone in authority would assist in securing a piece of land for the children.

The NGO head acknowledges that the children need much more help. She said foster care has been contemplated, but the grandmother is against it.

"We have several situations like theirs and it is heartbreaking that we cannot do more," she said.

"We can only take it one day at a time," she said, but no one is sure how many days John and Tammy might have.

It is estimated that some 2.5% of the country's population lives with HIV which means that between 18,000 and 20,000 of the population is infected. Some 3,000 to 4,000 of those persons need to be on treatment but just 1,200 are on treatment at nine treatment sites in Guyana.

Stabroek News