19th Mar 2024 11:28:43 AM

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Nkosi Ncube



















Nkosi blows straws, balloons and bubbles for his speech therapy.



Nkosi on 23rd May 2011, still with stitches in his left upper eyelid, after his ectropion scar release with Dr Amy Jenkin at Charlotte Maxeke Johannesburg Academic Hospital.
He still needs a lot more surgery, particularly to eyelids, face, chest, axilla. He still needs his ARV regime changed. He still needs pressure garments for chest and face. He still needs speech therapy as he understands well but does not remotely have the spoken vocabulary of 450 words that one would expect at his age.
He is attending the Johannesburg School for Blind, Low Vision and Multiple Disability Children where he is learning to scribble happily with large pencils like a two-and-a-half year old would.



Nkosimayibongwe N was born 21st November 2008 in the Bulawayo area of Zimbabwe.
He was burned 10th August 2010.
His first name means "Thank you, God."
But one wonders, thank you for what?

Thank you for life. And a happy healthy older half-sister. And bright parents each with tertiary education.
And then...?
For giving his mother Nevirapine when he was born to prevent mother to child transmission of HIV.
And then...?
For her breastfeeding her child and ensuring that he is now HIV positive.

It was with this shouting cacophony of emotions that we accepted a new toddler at Children of Fire.
It is tough enough with declining surgical standards in South Africa and the recession still biting worldwide, to try to get any indigent child surgery.
But to then persuade doctors that this little boy with severe ectropion scarring, and a severe left axilla contracture, and bad chest burns, and facial keloids, should have the five, or ten, or 15 operations that he needs, will be so hard.

Under the age of six years old, he can notionally get surgery free of charge in South Africa. But they will most likely find ways not to help him because his "prognosis is poor".
We talked by email for a long time. We had the pictures, knew the burns.
But only when his parent was about to leave, did he mention the ARV regime that has to be taken every 12 hours for the rest of Nkosi's little life.

On a quick checkup at virology in Charlotte Maxeke Hospital, they said: "the parents blackmailed you by not telling you in advance."
And so they did.

But Nkosi is here now, settling in, making friends, getting potty training, learning to scribble on paper and playing with toy cars and music boxes. It's April 2011 and the battle begins.



Nkosi Ncube is a complex little boy who allegedly had three fits in his young life.
He supposedly fell into a rural cooking fire outside his grandmother's home and the parents assumed that he had a fit when it happened.
He was born HIV positive and unfortunately put on 12 hourly antiretroviral medicine from the outset, so he will have to remain on them for the rest of his life.
He arrived to stay at Children of Fire on Thursday 14th April 2011 and was scheduled to meet leading ophthalmic surgeon Chris van Niekerk on the following Monday, because of the severe ectropion scarring on his left eye in particular.
He needs axilla (armpit) surgery, hand surgery and most urgently, facial surgery, especially to the eyelids of both eyes as well as the keloids around his mouth. Nose surgery would definitely wait until he is older.

This material is Copyright © The Dorah Mokoena Charitable Trust and/or Children of Fire , 1998-2024.
Distribution or re-transmission of this material, excluding the Schools' Guide, is expressly forbidden without prior permission of the Trust.
For further information, email firechildren@icon.co.za