Innocence Robbed

Couple of weeks ago I was talking with Bhawana Bhatta, a very active  Manager of Yuwalaya resource center, which is a NGO and a young and multi talented TV journalist Ashma Aryal. It was a very casual talk in the office of Bhawana. Ashma had been to one shelter home for HIV infected children which is in Kirtipur. Being a journalist Ashma wanted to cover one story on these children and also the dedication and advocacy of the founders. Then she came to know that she can't cover the story in her TV channel about these children. Or even if you take the picture you have to cover the story without showing the picture of them. Suppose you report a story on TV then this means you have to talk about them without showing the picture of children who are living a very discriminated life. Why ? the only answer is, it's international law. You can't tell the story of HIV victim unless the child turns 18 years old. But, the question remains unanswered that why a child has to wait until he/she turns 18 for the mistake he / she never committed ? These children can't go to normal school or can mix with normal children of their age.

What is the mistake of these children ? lack of knowledge about the HIV virus and hyper fear with the virus and this ignorance is with those who are well educated like doctors treating them as well as principals who won't admit them in their schools. Can we  discard this topic as Social stigma ?

Last week, three of us and Yadav Pandit,  career counselor from Yuwalaya went to visit Baby Life home in Kirtipur, Bhatkepati. Bhawana have funded my concept, Books for children and Education project. Under this project she single handedly donated the stationary supply for total of 41 children and some out of course Books for Children in three children homes. We have  visited two children homes and distributed. We still have to visit one more children  home that is in Pepsicola town Planning which shelters the children of prison inmates.

Once we were in children’s home, we sat down to talk with these children and get to know the name, age and part of the county they came in this shelter home.  Majority of the children are from Surkhet, Dang, Dailekh and Pyuthan; areas Bhawana as an active social worker is well aware of.  The youngest one was three year old and the oldest one was fifteen. Out of 23 children, 9 were girls and 14 were boys.

They looked very healthy to me, at least by appearance. Interestingly, its founder duo Mrs. Uma Rai and Mr Rajkumar Pun have taken very good care of children’s mental health as well as physical. The immunity count of some of the children were as low as 200 when they had joined the shelter but, it now has risen to 1700 and more since then, Mrs. Uma Rai one of the founder of the shelter home as well as school for these children shared with us. Some of them have the immunity count which is above the normal healthy person.

Upon infection with human immunodeficiency virus (HIV), a person's immune system kills off nearly all of the virus and infected cells. But some small number remain, and over time, those HIV cells replicate, and replicate, and replicate. Then, usually 10 years after the initial infection, the viral load reaches a critical count, and the virus begins killing off the vital immune cells that protect us against infections.

At that critical count, a person is considered to have acquired immunodeficiency syndrome (AIDS); with the body’s immunological defenses destroyed, it's usually only a matter of months before a range of opportunistic infections and cancers complete their lethal work.

Researchers have developed a number of powerful drugs to help people like Johnson avoid this fate. The key weapon has been a regimen of three or four antiretroviral drugs, collectively known as highly active antiretroviral therapy, or HAART.

She shares her struggle story and takes so much pride in some of success after all the struggle. Like how some of ‘her children’ were in ICU for about a week and how they have survived and how healthy the children are now.

Mr. Dutta Ram Rai Hostel Incharge who has been associated with this home ever since it was established seven years ago, tells me the minimum cost of medicine per child per month comes to a 1000 Rs. Good news is all the medicine supply for these children are free by the government. All of them are the patient of Teku Hospitals. However they also have some sad and bad experience of visiting hospital. Doctors in Teku hospital  hesitates to cut open them if they suffer seriously and needs an immediate operation to save them. They fear they will be infected with HIV/AIDS. Sometimes the doctors in hospital deny to admit sick children even if dying child need to be admitted in ICU. There was case when there have been vacant ICU or bed but doctors have told them bed not available for their children. No wonder, they have moments of emotional meltdown and hut discussion goes with hesitant hospital staffs to provide the immediate service for these children, when one of these child  falls sick and needs immediate hospitalisation.

The children have recently been moved to the new area. Last years earthquake have damaged their old shelter home very badly. They are managing in very narrow tin top temporary sheltor. A concrete building is rising nearby the tintop  shelter which will be used as school as well as shelter for children.

Along with the stationary items Bhawana also had included one school bag for each of them. Then we came to know that these children do not go to school.  Why I asked the Hostel Incharge, Mr Rai. None of the principals in Kirtipur [government as well as private] area would take a single child in their school, fearing other children will be infected by the same disease. It seems we need to target school principals and Doctors and hospital staff first before we target other areas when it comes to awareness about HIV/AIDS and how it will get transmitted. How come a doctor, a school principal, medical staff  and school teacher are not aware enough about this disease to fear them seat next to them ? How can school management deny a child to join school based on the disease child is suffering from ?

How can a doctor deny treatment for a dying child ? should he still be called a doctor if he does so ?

The area they stay are avoided by locals, as if they will be infected if they touch them. It seems that the awareness of the HIV/AIDS has not touched the educated circle of the society so it should not be a big surprise if the average people is not much aware about it. Does knowledge means knowing the children are infected with grave illness but not knowing how to treat them ? What is education anyway ? It seems fear of this disease needs to be cured first among the educated mass before we cure HIV/AIDS.

Good news is Shikchya Sadan the name of the school that provide education to HIV infected children privately. Upto grade eight the school have got the government approval. These children gets regular education in the shelter. This school focus not only in bookish educational knowledge but also takes good care of mental health of the children along with physical. Singing and dancing is basic part of the education in this school. Many of the children are so talented that they have won some national awards in singing competition and writing competition. Children are also encouraged to take very active part in most types of sports.

Each child is aware of their disease and they talk about it instead of hiding it. They appear very normal children. During our visit all the children also told us, what they wanted to be when they grow up. Some wanted to be doctor, some lawyers, some actor, and model and some pilot. Thier dream is so versatile and interesting to hear them talking about the future plan the principals and teacher of the area failed to see beyond the couple of years down.

Long time back I have read so much about HIV/ AIDS because Magic Johnson, the famous basketball player in US has been infected with HIV/ AIDS. When the news hit the headlines in 1991, many presumed he will die soon. He was judged  for his habit and condemned for how it got him. The medicine science has changed a lot over the 25 years and he is still healthy and strong after all these years and he still is in sports industry as an analyst and businessman as well as he is a strong voice and hope for those who are infected with  HIV/ AIDS.

"There is nothing unique about Magic," said Spencer Lieb, senior epidemiologist and HIV/AIDS research coordinator for the Florida Consortium for HIV/AIDS Research. "There are still people alive and kicking and doing very well 20 and 30 years after infection."

It seems our doctors, medical staff, school principals and teachers in kirtipur area do not know a single thing about Magic Johnson otherwise they would have punished those innocent children for not admitting them in hospital or accepting them  in their schools. I really wonder who gives them right to discriminate against the innocent life like this ?