AIDS Orphans

It does not take an expert to discover or know the landscape of AIDS in India. I am not, so to get an idea from the world of internet just type in your browser ‘People Living with AIDS / HIV India 2015’ or  ‘Children Living With HIV India 2015′. You will come across a range of maps, figures,  graphs and columns stating the fact that, “India is the third largest country in the world with people living with HIV and AIDS wherein a very high percentage of people living with HIV / AIDS are under 15 years of age and more than half of the diagnosed are not receiving any treatment. Rather a lot of people in India are still unaware of the disease’.

The picture, then, is not encouraging. What did you expect? A major scourges of this overpopulated country has difficulty in getting access to health care. They are the ones living with low income or in rural areas where going to a doctor is considered a luxury. “I remember in one of my visits to Mumbai Smiles NGO in April 2014. Dr. Nirmal Ahuja, Unit Head of Health let me accompany him for visit to the Tata Hospital Memorial Centre which hosts excellent  cancer specialist doctors and a paediatric ward which offers treatment at low cost. This is the only hospital in Mumbai that offers such specialist aid. In fact, it is also the only one in India. People around the country make long and costly journey to find a cure for his grave disease in this centre. The feeling I had when I came in it was being at a train station where hundreds of people are sick”. It gave a feeling of sitting on the floor waiting for the ‘train’ which in true sense meant the doctor. This wait can be for months, yes, months! One of the doctors also left a consultation because an avalanche of people bombarded him with agonizing questions that needed to be resolved.

“Doctor this, Doctor that, Doctor Doctor”, were the cries one could hear across the floor, making the doctor run for cover in his office. The case with AIDS is not very different. There are a few centres of excellence for many who need the treatment which provide low cost medicines or even free. Even though there are drugs, protocols, initiatives and programs evolving slowly, still are not sufficient.

The difficult access to quality universal health care, lack of information, ignorance and stigma about the disease is relative to the suffering gone through by these patients. Rejected by society and their families just further aggravates the situation wherein more than 2 million people live with HIV or AIDS in India. Within this epidemic would be the propagation of this disease.

AIDS Orphans, although the is getting  increasingly are more focused on this aspect, India fails to stop vertical transmission of this virus through the unborn child. These children are “cursed” and marginalized in the society through no fault of their own. They are the new untouchables and are very susceptible to end up as street children as his/her parents are ill because of the disease or even dead. Their relatives or near ones do not wish to take up the responsibility of costly treatments and so these children are abandoned and made to fend for themselves.

In 2010 the Indian Sunrises entity Sabadell, of which I am a member, contacted two orphanages at  Shahapur, on the outskirts of Mumbai. These are run by the congregation of Herman Catholic as “Helpers of Mary”. They take care of hundred girls carrying the AIDS virus. I have made numerous visits during these five years  to these orphanages.
The visit gives me a better idea and I can understand their dilemma or problems they face on a much more personal level.  An advice- Do not share the name of the orphanage or picture/name of the child suffering with AIDS to save them from being victims of abuse and ill treatment from the neighbours or relatives.

I’d like to share a story with you-

 “I have to admit that among the hundred small princesses dressed in fabrics of thousand colours and flowers, the clips that collect her dark hair; there is one that has stolen my heart, Ambika. Ambika is a girl of about nine years old but due to a problem of growth she looks like an eternal girl of three years. Maybe that’s what makes Ambika a darling in the orphanage”.

She is the daughter of a prostitute from Nepal and lived in the neighbourhood of Kamathipura of Mumbai. This grim and dangerous slum hosts one of the largest and the oldest brothels in all of Asia, one of the main focus of HIV and AIDS city. Ambika’s mother died of AIDS and thereafter, she was expelled by the rest of women. She and her mother shared a tiny room and after her mother’s death Ambika moved on to the streets. This is where the orphanage found her and took in her to Sahapur orphanage.  One warm afternoon on the porch of one of the orphanages, I watched Ambika eat a piece of watermelon. It was a quite a sight with  Ambika biting the watermelon hard but has little effect. This is because of the mouth problems she faces due to the illness. Despite being stable, she was treated a little too late. But her laughter has never left her face; surrounded by the chaos of this dreaded disease, Ambika always manages to laugh and spread joy around.

Nirmala, one of the caregiver Sister’s told me that Ambika has arrived at the orphanage she wouldn’t eat. When meals were distributed she would try and hide her skin ailments under her skirt. She would only come forward and eat when no one was looking. For her, the food where she came from was mostly stolen. I could tell you all many more stories like this because when the girls were busy playing in the courtyard the Sister’s would tell me origins of each.

“Geetha scampers around the small tight red fish playground, I met her in November 2011. -“We have a new baby girl!” – I heard Sister Priya say happily. And there was Geetha at one of the steps staircase entrance. She was found abandoned in the floor of a fish market near Mumbai population. Their only company were the cats trying to steal the fish making the vendors angry.  Of all the stories Sister told me, the one that struck me the most was that  of Harshad,  “Harshad is a skinny girl, small, dark skin and eyes which emit sadness. She has difficulty walking as her legs are slightly bent. Harshad is timid in nature, does not leave the orphanage, does not play with other girls. The other’s also don’t seem to make much of an effort to speak to her. “What will be done with Harshad”, I asked. To which Sister Nirmala replied, “She came to the orphanage looking scruffy and could not even sit properly. In fact this was one of the most unique situations in the first year of her life”.

Harshad grew up lying in bed next to her dying mother without practically associating with anyone or move much; malnourished and sick. Now I understand everything, I thought. One day I shared games with girls, “do the little train” wherein I was the driver. Harshad timidly approached looking at us suspiciously. – “Harshad going! Gets on the train “- not up. -“Harshad going up you want!” We Love you, we love you; screamed all. Harshad smiled and boarded the train. Never underestimate the power of love.”These girls have outgrown their tough history and they are part of a program, National AIDS Control Organisation (NACO) and are treated with antiretroviral by visiting regularly to Sion Hospital.

These girls are rejected by society and they do not leave the orphanages and do not go to the village school in Shahapur. Their neighbours are afraid as they know little of the disease and least concerned about their children. And what happens when they leave orphanages? “Well, It was December of 2012, I think, when I was invited for Christmas party at one of the orphanages. The next day I returned to Barcelona. After the party while saying goodbye to the girls, Soniya ran up to me hugged me, I was distraught. What happened to Soniya, I’m afraid “- I told myself -To which she replied,” I’m going to live in Pune with my uncles. I do not know them and I do not know if they are good people which makes me afraid. “

After a couple of years, during one of Strass visits, I discovered with great joy that Soniya was back in the orphanage. I do not know what happened but something did. Soniya has decided to stay in the orphanage forever and make the biggest out of the smallest of pleasures. Another story is of Sangita, different from that of Soniya’s. She lives a normal live in the orphahnage and works as help in cleaning the houses. In Spain its quite normal for someone with HIV to lead a life and have a family without spreading the disease. But in India it’s very different and the possibility of staying single is always frowned upon.

The main fight of patients with HIV is to ensure adherence to treatment i.e. to avoid possible resistance to anti antiretroviral (ART). When a patient with HIV becomes resistant to  ART, then they must be changed if the disease progresses causing the onset of AIDS and death. One must ensure adherence to treatment of a patient with HIV in India is which in itself is an obstacle race and the one which is very difficult to win. “It may seem crude to what I am going to tell now but every time I visit orphanages, the first few minutes, the  girls welcome us and I put them in a row which gives me an  the opportunity to take a quick glance and make sure that all of them are there”. On my last visit I missed the guy who always sang. I cannot remember his name and his face but it always seemed like his eyes shown like the starts which engulfed years of history. He was found in street along with two smaller children. One was his little sister who has HIV which she accidentally contacted from the mother. He protected them.

In India, orphans with HIV cannot live with the healthy. Whenever he visited orphanages, he would grab my hand and with a smiles he would say, “I want to sing a song? “. And sang and sang those songs … maybe he had learned from his mother or grandmother. But now the scenes have changed. When I asked Sister Nirmala, “where the child that always sings? Solemnly she answered, “He is no longer present with us” and quickly changed the subject. This moment taught me to not ask such sensitive questions in the future.

By- Nuria Crusafont, Indian Sunrises

Sunrises Indian is a non profit association dedicated to providing support to orphanages and other institutions devoted to care and child protection for the vulnerable in India. Indian Sunrises is an associated organization of the NGO Mumbai Smiles and now gives economic support to the HOPE project which gives treatment to children suffering with cancer and belong to families without resources.