Dorah Mokoena will be 10
years old on April 12th
2004. This little South African girl was severely burned in a
squatter camp fire at the age of six months. She was turned away from three
hospitals which were convinced she would die.
Because of the severity of the fire and because of the delay in getting
appropriate treatment, Dorah lost her nose, eyelids,
lips, bone in her forehead and hands. Her ears are deformed. She has a badly
scarred chest that will develop unevenly during puberty. Much of the rest of
her body has been damaged by trying to repair other parts.
Her biological mother Margaret abandoned her for more than three years but
was reunited with her daughter for some two years, following strenuous endeavours by trustee Bronwen Jones and her family and,
later, a lot of support in Britain.
Margaret abandoned her daughter again upon their return to South Africa in 2000.
Dorah’s early years were spent almost entirely
cot-bound. Nonetheless she had several friends who visited her regularly: a
young boy Tristan, his mother, and his friend Thobeka. They tried to ensure that Dorah
knew the pleasure of childhood friends.
In December 1997 the doctors charged with Dorah's wellbeing intended to remove her eyes, because they said
she was blind. And because the dressings used to protect them were deemed too
expensive. This decision - and the ability of caring individuals to overturn
the decision and to save Dorah's eyesight, led to an
appeal published in The Times (UK).
The formation of the Dorah Mokoena
Charitable Trust in the United Kingdom
and the Children of Fire Trust in South Africa followed as a result of the response
of the public to Dorah's plight. Later the British
charity evolved into Children of Fire
The charities assist each other to provide medical treatment, therapy and
education for Dorah and other child victims of burns injury
and disability within Africa; proactively try to prevent
burn injuries through education of Southern African communities; and inform
people how to seek the swiftest and best-possible medical treatment for
children who are burned.
Dorah’s lips were made by John Clarke, a
reconstructive surgeon at Chelsea and Westminster Hospital,
and previously at Roehampton. They are not flexible
but they allow her to eat solid food, for her teeth to grow properly and allow
her to speak a little.
David Martin at the same hospital, opened one
“hand” out of her right arm stump. Richard Collin at Moorfields Eye
Hospital in London,
gave Dorah “eyelids” that cover and preserve her
eyes. David Gartry attempted a corneal graft at Moorfields Hospital.
Colin Haylock of Charing Cross Hospital
makes Dorah’s best prosthetic noses.
Simon Kay and colleagues at St James’ Hospital in Leeds
will hopefully try to create a thumb for Dorah. This
might be done by creating a forearm radial flap, where a cut is made into her
right “hand” to make a cleft between the lowest thumb bone and the rest of the
“hand”. The cut would be lined with a flap of live skin, veins and all, from her
forearm and might make a short mitten-like hand.
If the process is deemed impossible, the alternative would be to cut a toe
off from her perfect feet and transplant it onto the “hand”.
The odds are stacked against various procedures succeeding, particularly
because the medical profession largely believe that Dorah cannot learn to use a digit if she cannot see it. But
the odds have always been stacked against Dorah. She
survived despite being on “managed care” (i.e. die gently). She learned to walk
despite her South African medical team writing: “This child’s legs are palsied,
wasted. She will never walk.”
With inflexible lips, a very late start and even some damage to her hearing,
she can nonetheless talk a little.
So we hope, regardless of the odds, that Dorah
will get a working thumb that will allow her some independence and some privacy
that will otherwise be denied to her for the rest of her life.
Education and personality
Prejudice is the biggest obstacle to Dorah
learning. This is more extreme in Africa than in the
more affluent parts of the world, but everywhere it is a problem. South
Africa’s Department of Education,
particularly in Dorah’s now home-province of Gauteng, treats her as a problem
that the department wishes would go away.
Officials are offered information on delayed development through prolonged hospitalisation; the physical effects of major burns on
development; the loss of hearing due to excessive hospital use of antibiotics
after severe injury; the manner in which effectively-blind children can learn;
and our accumulated wisdom on multiple disability; and more. Their “solution”
in December 2002 and again, when they revisited the topic following media
pressure in March 2004, is to dump Dorah in an
overcrowded institute for severely mentally disabled children. We have refused
this option and Constitutional Court action against the government will procede.
Part of the problem is political and that maybe is the hardest factor to
overcome in a fledgling democracy. It is so hard for people who have hated each
other for so long, to understand that some people’s only motivation for helping
an injured child, is love.
A new charity is evolving directly from Dorah’s
need for education. The Johannesburg School for Blind, Low Vision and Multiple Disability Children started in 2003. It
receives no government assistance at all.
Dorah can walk independently but when her vision
deteriorated, so did her confidence. In the family home, she can find her way
from room to room. She can walk up and down steps using a bannister,
but where there is no railing or other human to hold, she crawls up and down
She can jump a little and she likes to dance, mostly when holding on to
someone else. She can climb up and down ladders but she doesn’t like going on
the slide. She swings very high, hanging
on by her elbows, with enormous pleasure. She enjoys see-sawing with her
brother and other children and she loves playing in warm swimming pools or the
Dorah can ride a bicycle when her more vigorous
classmates don’t break the special “hand”rests and
she can somersault.
Dorah can drink by herself (she uses her tongue to
seal the cup where her lower lip doesn’t have the required flexibility) and she
can eat by herself. She uses thermoplastic splints with a spoon or otherwise
picks up the food with her arm stumps. It is messy but it works.
Dorah has clear preferences for high protein and
high cost foods. She likes smoked oysters and smoked salmon. She prefers
chicken to potato; cheese to bread. She will feel the different ingredients of
a meal and push the carbohydrate on the plate to one side. She does not like
over-sweet cakes and sweets but is quite a fan of junk food, salted snacks,
chocolate, sausages and almost all fruit.
She can repeat the whole alphabet and some numbers and months in order. She
used to sing favourite songs by tune only (Happy
Birthday; Frere Jacques; Away in a Manger; Twinkle Twinkle Little Star; If you’re
Happy and you know it... etc) but sometimes vocalises
the words as well. At first it was just “yappy (i.e. happy), yappy, yappy” to
the tune of “If you’re Happy and you know it” and more recently, quite
distinctly, the words of “Happy Birthday to You”.
Some songs are confusing. At a creche that she
attended for a while, they used to sing “Good Morning to You” to the tune of
Happy Birthday. So we would greet Dorah “Good
Morning” and she would start singing the “Happy Birthday” tune... and
eventually we worked out why.
She greets her brother by name, asks us how we are, and answers “fine” if we
ask how she is. She tells us that she loves us, and she bids us Bye Bye (sometimes Ta Ta) or Night Night as appropriate. She can nod her head and say Ya for Yes but does not accurately
hear the S in “yes”. She uses sign language for “more” combined with the spoken
word; the same for “finished”. Her understood vocabulary is vast but her spoken
vocabulary that we can clearly hear, is maybe no more
than 500 words. Dorah speaks very quietly, right in
the back of her throat. She “clicks” to indicate she needs to go to the
lavatory and throws a tantum if she smells chocolate
but isn’t given any!
She is an exceptionally loving child, always ready to give a hug but not
always understanding that she is now too heavy for some people to pick up. She
is sometimes consciously naughty and often, for those of us who know her well,
very funny and mischievous too.
Dorah is aware of her body damage and that other
people find her shocking to look at. Sometimes she is sad about it. And when
there are too many other burned children visiting, she demonstrates jealousy if
they get too much attention.
But because she is part of a functioning family, complete with boisterous
dogs and her own possessions, territory, and routine, she is well-balanced. Dorah is a normal little girl against the World’s
The Future for Dorah
Our commitment to Dorah is to see her through her
operations, hopefully most concluded within her childhood. Other people who
have had severe burns or similar deformities to those that Dorah
has, have had operations spread over many many years,
because some aspects cannot be rushed and because the body and the mind need to
rest and build between operations. Our extra impediments are money and time.
The charity that started around Dorah, has grown. There are huge numbers of burned children in
need and each extra one that is helped can, sadly, detract from the time, money
and attention that Dorah also needs.
The hands-on work has largely been carried out by one woman and her son,
seven days a week for seven years. Fund raising is still linked to the story of
Dorah and to a lesser extent, some of the other
children who are being helped. The needs are vast and
If Dorah is forever in hospital she has little
chance of catching up on schooling, normal development and social interaction /
family life. Most people, who are injured during childhood or born with
deformities, continue to have operations well into their adult life.
medical timescale. The surgeons involved do not like to commit
themselves far ahead because they are terribly aware of the potential for many
a slip twixt cup and lip.
Fourth birthday – April
12th 1998 Eyelid reconstruction completed at Moorfields, London.
During late 1998 –
Reconstruction of lips Roehampton/Chelsea and Westminster.
Age five - late1999 - corneal graft and cataract
removal on right eye; improving shape of lips.
Age six - 2000 – More work on the space between gums and lips to
improve oral continence i.e. to decrease dribbling.
Age seven – nine. 2001 – 2003
no surgery. Many discussions with surgeons and requests for help from Swansea to Sydney, London to Leeds. Focus upon stability in her family life as her
biological mother had abused and abandoned her again and Dorah
became a full member of trustee Bronwen Jones’ family. A visit to the British
Association of Plastic Surgeon’s annual congress in Newport,
Wales, where a few surgeons agreed to see her and others refused to. Assessment at the MorristonHospital, Swansea.
Age ten - 2004 In April 2004 Dorah will meet with Simon Kay of St James’ Hospital in Leeds,
The quest is for a thumb. We anticipate surgery might take place in July 2004.
Dorah needs more skin (tissue) in her face. It can
be moved around in the face or into the face. As Dorah's
body gets bigger, she may be more able to spare skin.
One can elect to make a saline or air bag "pregnancy" under
certain areas of skin to stretch them - but the UK surgeons seem not as keen on this method as their South African counterparts.
The problem with delaying moving skin is that while Dorah's
skull is now growing in a better shape than before, it is still not growing in
the correct proportions and every year skin / tissue movement is delayed, her
head will grow more deformed and much of that may be irreversible. It is
compensating for areas of permanent bone damage and tightness (all around the
nose region, the forehead, and the stretched deformed ears) by growing too much
in other areas. The lip work in 1998 has allowed Dorah's
jaw to start to move towards its proper alignment but she is still not able to
close her mouth.
Maybe 2004 will bring a right hand thumb
solution. Maybe even prosthetic thumb implants.Dorah however, is
left “handed”. It is not known if this
is how she would have developed if she had never been burned. It may be that of
both the injured arm stumps, the left one is simply easier to use. It would be
good to open the left stump and create something more useful from the melange of bones that is there.
All child amputees have bones that continue to grow, nearly always faster
than the damaged skin can keep up. Sometimes bare bone protrudes through the
skin. Always there are times when the limbs are sore or even very painful.
Living in Johannesburg, 2000 metres above sea level, the winters are bitterly cold and
dry. These factors combined, lead to Dorah’s hand
stumps bursting open and bleeding. We hope that Dorah’s
new link with Leeds, will make this pain a thing of the past.
Dorah lost the vision in her right eye after
infection following the corneal graft.
A keratodontoprosthetic corneal graft to her left
eye using part of a relative’s jawbone and /or eye teeth or part of one of Dorah’s bones, could still give her left eye a chance to
see. (Christopher Liu pioneered this surgery in the UK but the best person in the field is in Italy;
the best person in skull bone replacement is a Bulgarian professor, Dorina Krastinova, in Paris,
If surgery was carried out to Dorah’s left eye and
failed, she would lose the sense of light and dark to which her diurnal body
rhythms are set.
The chance of putting muscles into her eyelids is extremely slim.
2004/2005 - skin grafts are needed in Dorah’s
chest as she starts to develop breasts. The skin there is too tight and one
breast might not grow at all.
Age 12 onwards - improvements to previous work; extra tissue movement
to allow for growing body size. All trustees and supporters are advised to read
the considerable amount of text on the burns survivors
websites (at least one is cross referenced to from our own site). It would then
be clear to them that the operations will have to continue for a long time but
can decrease in frequency over the next couple of decades. The sorts of aspects
that are of great emotional importance to people with damaged faces are to be
able to smile when they want to. And to be able to have the normal facial
features like eyebrows.
Dorah has no eyebrows. One adult male who fell
into a fire when he was camping, lost his eyebrows. He was operated on to move
hair into the eyebrow region, because this feature was important to him. What
he hadn't realised was that his new eyebrows were of
a different sort of hair that grows rapidly like the hair on one's scalp and so
he will have to cut his eyebrows every single day for the rest of his life. Dorah does not have a normal hairline, so her face appears
too big. Both eyebrows and hairline can be dealt with surgically, but
realistically we are only likely to try to improve her hairline after dealing
with the boney deficit (hole) in her forehead and the
poor quality skin graft currently on top of it.
text revised March 2004