Come cry with me.
We could have a crying chain around the world, individuals who feel shock, horror and a sense of hopelessness that such things can and do happen.
Another dose of my fictionalising of the facts I find so hard to accept
HIV AND LITTLE ANNA
“Parents very poor, she not do well at school, she HIV positive and problem with skin. Legs have rash, very bad, she no run or walk far. Very bad, parents no send her to school anymore. No money. We should help.” The Mama’s broken English somehow emphasised the pitiful plight of the small, sad child sucking on the sleeve of her sweater and twisting side to side nervously as she watched the other kids play.
The January enrolment programme at Good Hope was underway. Good Hope provides a place for kids to be when they are no longer accepted into the government schools. In reality it is a couple of rooms filled with love and manned by a succession of international volunteers armed with the desire to help and teach the kids some English. This tiny NGO already supports the lives of over sixty teenage kids in total with thirty-five of those being sponsored into full-time education programmes.
January provides the natural water shed for a new intake within the two room school fuelled by love and hope. As kids fail their standard seven primary school exams, or money runs out for the negligible but insurmountable sum of less than $100 primary school fees, or as with Little Anna above it just isn’t deemed worth struggling to pay it, when she cries all day and fails every test.
Little Anna joined the tiny school, the school without trained teachers, exercise books and often no chalk. The school built on love, determination and HOPE, the school that tries to tend for anyone affected by the curse of HIV/AIDS. Little Anna at thirteen years old can only have contracted HIV from her mother and will carry this curse all her life.
Little Anna was shy, incredibly so. She cowered when approached by one of the strange white people, her smiles always covered by a nervous hand usually clutching the edge of her well-worn and most likely third hand sweater. The sweater she wears around her shoulders every day and uses as a comforter like any three-year old toddler in the developed world. She seemed to have zero comprehension of English, which is less than the least competent of the rest. She could not manage basic arithmetic and so the simple long multiplication being taught at the lowest of Maths class was impossible to her. But everyone loved her.
As the months rolled by Little Anna’s smiles became more open, her laughter slowly became heard and her ability to learn was slowly and patiently uncovered by the loving care of one of the volunteers who took responsibility for one to one tutoring. The volunteers discovered there was a spattering of English buried within the shyness and her classmates discovered a new friend.
Friendship, that is the wonderful thing about these kids, they all have it tough in one way or another and they respect that in each other. There is little or no teasing, there is no alienation of the weakest, there is no bullying. There is respect for one another. They are fiercely competitive against each other and dismayed when they have to give up first place in something but they will still be genuinely happy for the victor. They understand, without being taught, that it was no one’s fault but their own that they didn’t take the top place, if anything they are a little too harsh on themselves. But they live in a fiercely harsh land and so, one must assume, that is their armour.
The unspoken rule of sponsorship of the longest attending student first was ignored and blatantly disregarded. Little Anna could still get her place in the government education system which is substantially less monies than the private sector and the only feasible option for her. A sponsor was found and monies deposited in the bank, enough to support not just the fees but the required uniform and books too.
Little Anna’s “skin rash” was getting worse, her tiny legs were (are) covered with boil like pustules which horrified and shocked the volunteer when shown. The rash was spreading visibly to her face. The Good Hope Mama was distraught and fearful for her. She must receive medical attention. With monies in the bank Little Anna visited the local hospital to seek help and the sponsor informed that funds had been used to help her medical condition.
The local hospital declared the skin issue to be food related, an allergy or poison of some sort, very serious and not HIV related. Expensive creams and strong tablets were prescribed.
Good Hope took charge of the administering of the medication to ensure she ate each morning before the medicine was taken. A local mama’s support was enlisted with the odd fried banana or mandazi free in the mornings. Little Anna seemed happier and was maybe getting better, or was that wishful thinking?
Plans to send her back to school made Little Anna cry. She loves to come to Good Hope, the kids at school teased her. The skin rash on her face is getting no worse but the really horrendous issue with her legs is getting no better. She needs a proper dermatologist.
She needed the big hospital, KCMC where international doctors sometimes preside to train and teach their skills to the local medics, but KCMC is expensive in comparison and you need an introduction/referral. A worker from another local NGO stepped in and made the much needed introduction and so finally Little Anna was taken to see a skin specialist, a doctor from Europe who called in the expertise of a fellow professor. They ran tests. They demanded the same tests were repeated. They studied the results. They studied them some more. They were horrified.
“This child is HIV negative,” his hushed tones emphasised the horror of his statement. “She does not have the HIV virus. The medicine is causing this problem, it is poisoning her.”
Two years of ARV (Antiretroviral Therapy) treatment incorrectly prescribed and administered every day. How? The volunteer demanded with shocked tears in her eyes.
Most likely a mix up with the results, Little Anna’s test results were most likely given to some other unfortunate child who has gone without the life-saving ARV that she or he needed.
FACT: Approximately 50% of HIV infected children not initiated on ART die before the age of 2 years, and of the surviving, about one-third die before 5 years of age
How long did the child who was given Little Anna’s HIV negative result last without treatment?
Aaahhh, you want a happy ending, the stuff of fairy tales and victorious knights? Well my friends let us ponder on the nearly happened one.
No one ever found out and the poison progressed through Little Anna’s body until it reached her tiny heart and stopped its life-giving pulse forever. That would make “the mistake of mixed up results” a killer of two children.
As a writer I aim to provide a twist in my tales but of the possible truth of this one shames me.
It is not that ending, this time, my friends.
What does the future hold for Little Anna? In truth the doctor doesn’t know. She will continue to receive the medical treatment she needs through the sponsorship programme. Her diet is now of vital importance. Fresh fruit and vegetables only, no fats or milks.
How a family racked by poverty will change their daily staple diet to fit the doctor’s recommendations I have no idea. Good Hope will try to ensure Little Anna gets what she needs nutritionally wherever possible. Breakfast will be a good start.
If you want to help Good Hope to provide a healthy breakfast for Little Anna click here.
But let us try to end on a happy note for the future does promise this young girl a life free from the curse of HIV. Hopefully, she will recover and continue a normal life, she will be able to marry and bear children without the fear of her passing on a terrible gift to her unborn children.
Come cry with me …
Little Anna is my fictionalised character. The facts of her illness – is the issue that I have been wrestling with over the past few weeks.