Not forgetting the childrenLiving with AIDS #236

SHADI PHETOANE: Ke Tshiamo leina la gagwe. La Sekgowa ke Blessing’€¦ Tshiamo le yena o tsaya treatment fa teng fa.   Ke gore o bo tsere mo go mama’€¦ Yoyoyo, bontle.. Ngwana o ga ke rate go bolella oo. Go ne go setse feela go le kana gore a tsamaye. Ke gore o ne a lwala, a fisa, a dule diso ka fo gare ka ko legano lena, a sa kgone go tja. Ke lele ke sa robala bosigo. Ga go le selo sengwe jaana e ne ekete ke tla tloga ke swa ke bolauwa ke pelo ya gore ngwana o a lwala ke bona gore bothata bo teng mo yena.

TRANSLATION: Her name is Tshiamo. Her English name is Blessing. Tshiamo receives treatment here. She contracted HIV from her mother’€¦ Oh, the treatment is wonderful. This child narrowly escaped death. She had a very high temperature, sores in her mouth that made it difficult for her to eat. I couldn’€™t sleep. It was as if I would die of a heart attack because the child was ill.

KHOPOTSO: That’€™s how Mme Shadi Phetoane of Matjhemeng in Phokeng village, some 20 kilometres away from Rustenburg, in the North West, talks about the relief antiretrovirals brought into both her life and that of her 19 month-old grand-daughter, Tshiamo.

Tshiamo started taking antiretrovirals in June, last year. She is one of 32 children, ranging in age from less than a year up to 15, who have access to the medication through a programme called ‘€œTapologo ‘€“ A place of hope, healing and compassion’€ – run by the Catholic Diocese of Rustenburg. The programme is the brainchild of Bishop Kevin Dowling.

BISHOP KEVIN DOWLING: Our people are so incredibly poor here, from the informal settlements and villages. We’€™ve set up eight clinics right in the locations where they live. So, this one is serving Phokeng village.  

KHOPOTSO: Most antiretroviral treatment programmes would first focus on adults, neglecting the needs of children for up to several years. But not so with the Tapologo programme. It operates in eight traditional and informal settlements from the Bafokeng to the Mankwe tribal authorities outside Rustenburg, where the nearest government centre that offers antiretrovirals is located. Tshiamo and her granny would have to spend money on two taxis to reach the government centre, which caters for people in a 120km radius from Rustenburg. But many people in these areas cannot afford transport to Rustenburg.

On designated week days Tapologo runs a mobile AIDS clinic in each of the eight locations.  

Impala platinum mines are an important feature of the area. Around the mines the informal settlement of Freedom Park has mushroomed. This is a predominantly migrant population. Sister Georgina Boswell, a Catholic nun who has worked in the area for 26 years, says this poses an immense challenge to the rollout of antiretrovirals to children.

SISTER GEORGINA: A lot of the mothers are unaware. They’€™ve come from outside places. It’€™s a very mobile situation’€¦ It’€™s not like a traditional village where you’€™d follow a child up from vaccinations and what have you. They’€™ll come in here very late, not aware that the child actually has HIV. So, yes, they are neglected, especially in an area like this. People are very mobile ‘€“ going back to Lesotho and Swaziland and Mozambique and coming back again and going back again ‘€“ and have no idea, in fact, that the child, although, is continually having diarrhoea and skin problems and coughing, actually, is a HIV patient. And, you’€™ll find that most of those children will not survive until three years of age.                

KHOPOTSO: How do you deal with that?

SISTER GEORGINA: We can’€™t put the child on treatment if it’€™s going to be mobile. We say to them ‘€˜if you are going back to your home place and that’€™s where you are staying we want to refer you back to say that you are HIV (positive) and, maybe, you should go on treatment’€™. But that’€™s not possible. A lot of them are coming from very rural areas and it’€™s not being rolled out.    

KHOPOTSO: Have you seen any deaths?

SISTER GEORGINA: We’€™ve got 32 children alive on treatment at this moment. Yes, we’€™ve had about four or five deaths of children. They’€™ve been the older ones ‘€“ 10, 11 year olds have died on us. They’€™d come in quite late. They were not from here. They came from somewhere else’€¦ We have two children from Freedom Park ‘€“ 10 and 11 year old boys who are on treatment at the moment. These children have gone back to school. When I see children going back to school and being able to participate in all school activities, then I’€™m happy.                

KHOPOTSO: Not only does the Tapologo programme offer antiretrovirals to those who cannot access them. It also runs a hospice, a home-based care service and an AIDS education drive that involves traditional healers. The programme opened its doors 12 years ago, but started providing antiretrovirals only last year. Of the 900 people in its books, over 500 are now on antiretrovirals. And Sister Georgina Boswell believes that the figure will grow. As others see others get better, like it happened with Tshiamo’€™s granny, Mme Shadi Phetoane, that is sure to happen.

SHADI PHETOANE: Go na le mosimanyane o monngwe wa kgaitsedi yake o na ntse a robetse ka fa sepetle se. Gore ke tle ke tle fa ke ge tsatsi le leng ke tla le mmagwe re tlo mo lekola. E le gore le yene amper ke se! Yanong ga a le ka fale e bo go tla gore mmagwe a re o tshwanetse a tsamae treatment fa. Ke be ke botsa ke bona ngwana oo a ntse a lwala ke be ke re ka gongwe ga nka isa ngwana oo wa ngwanake kwa teng a ka fola. Ebe tsatsi lengwe be ke tla. Ebe ke ra mmagwe ke re ‘€˜le wena ka mokgwa ke bona o fokola ka teng ge o ka ya le wena o tlo fola’€™. Ke ge re tla tla fa. Re tlisiwa ke gore re bona oo wa kwa rona a fodile, maar e ne e le gore a pallwa ke go tsamaya ngwana kgaitsedi ya ka.

TRANSLATION: My sister’€™s son was admitted at the hospice, here. One day my sister and I came to visit him. She told me that the son was about to start antiretroviral treatment. Seeing that my grand-daughter was ill, I asked about this treatment hoping that it will also help her. I then told the child’€™s mother that she must also come here to get help. We came because my sister’€™s son got better after he couldn’€™t even walk.                    

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  • healthe

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