Sicelo Maduna visited Cape Town in early 2006 with Bronwen Jones, the charity director.
Photos by Stuart M, at Camps Bay in Cape Town.
They met safer paraffin stove inventor Colin Vale and stayed in a Stellenbosch bed and breakfast, through the kindness of Mr Vale.
They also met several senior Cape Town fire fighters and Mario Oriani-Ambrosini and Peter Knop.
The former became an IFP Member of Parliament but mistreated Mr Vale by effectively taking his patent from him without reasonable payment.
Mr Knop who is an American lawyer, also treated Mr Vale very poorly.
Among various concerns, they broke South African Reserve Bank rules by exporting intellectual capital outside South Africa without permission and without appropriate compensation.
The outcome of this poor treatment was that Mr Vale faced such stress that it triggered cancer in him and he subsequently became very ill and died some years later.
Mr Vale should have become a rich man because of the genius of his invention, the Parasafe stove.
Children of Fire would have done its upmost to get the stove to as many impoverished South Africans to use as possible, but withdrew from the project as it felt that Mr Vale and Mr George Long, a fellow paraffin stove inventor, had been treated in a scurrilous and dishonest manner.
This meant that the best design stove to date (2013) has not reached the number of people that it should have reached and has not saved the number of lives that it should have saved.
The fault is in the people who sought to make money solely and who were indifferent to the plight of injured children.
Sicelo and his Life Coach Michelle Bennetts and friends went to look at aeroplanes in late November 2010.
Michelle (whose other job involves aeroplane safety), is helping Sicelo to find ways to handle difficult family situations, as on three different occasions his immediate relatives denied him essential medicines.
Children of Fire looked for something like an assertiveness trainer, as it is hard for a child of small stature to demand care from his family, or even to be able to walk to the closest police station and insist on getting help from the SAPS.
Sicelo also wants to meet his biological father and we hope that by gaining confidence with a Life Coach, he will be able to pursue his different goals in life more effectively.
In early March 2007, Sicelo Maduna and director Bronwen Jones helped coffee and food shop franchises Mugg & Bean with their awards evening, handing out certificates to the best performing stores and individuals.
Sicelo gave certificates here to Mike Fowler from Constantia in the Western Cape.
Anne Hodes of Angelfish PR & Events took the two photos.
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Sicelo (taller, age 11) and Simamkele (shorter, age 8) with new hairlines
Sicelo needs nose stents to keep his reconstructed nose holes open.
He really really wants to live life without plastic “macaroni” in his nose.
Sicelo Maduna, aged ten, has a whole backpack of medicine. Life is hard as a young burns survivor who is also HIV positive. He has to take antiretrovirals twice a day, every day for the rest of his life.
Brith Sicelokuhle Maduna, called Sicelo, was born on May 14th 1998 to
Matsiliso Happiness Maduna (born 1976) and to Muzi Kubheka. At the age of
one month he was severely burned when a candle fell onto the bed. At that
time he was living with both his parents. The father abandoned his girlfriend and child after the accident.
After Sicelo's initial injury he lost most of one arm and had terrible facial burns. He was taken to Volkrust Hospital and
transferred to Kalafong Hospital in Gauteng, near Pretoria for surgery.
He was transferred to and from Pretoria Academic Hospital for further surgery. He was discharged from hospital 20 December 1998.
He spent only four days at home and was taken back on December 24th 1998 because of 'extrusion of brain tissue' through the boney deficit (hole) in his forehead.
He had further surgery and monitoring before again being discharged in mid
January 1999. He went back to Kalafong after a month for a checkup and
surgery started on the upper lip. Visits continued for most of 1999. His
mother had promised to forward details of all hospital appointments Sicelo
had in his early years to Children of Fire but she was not able to do so.
The consultants seen at Kalafong/ Pretoria Academic were said to be:
Professor Ionescu and Professor Pienaar. No further
appointment was made and the mother said that she thought that they would
contact her! Four years later, Children of Fire was made aware of Sicelo's plight and now surgery will continue as long as is needed.
In the early years, Chloromed eye drops were used three times a day in the most
damaged eye but for lengthy periods of time the clinic would run out, so the
mother had to try to collect it from the provincial hospital. This added to the damage suffered by that eye.
Arrival at Children of Fire
Sicelo arrived to stay with Children of Fire in Johannesburg on February
28th, 2004 and has been taken to see the plastic surgeons at Johannesburg General Hospital and the ophthalmic surgeons within Joburg Gen as well. He was also taken to Dr Aziz Valiallah, an ophthalmic
surgeon at Brenthurst Clinic.
Sicelo was at first booked for surgery on 30th August 2004 to release eyelid contractures, but the charity managed to move the date forward by five months.
Sicelo Maduna had surgery to rebuild the lower eyelid on his right eye in late March 2004 at Johannesburg General
Hospital. He was checked on April 5th 2004 and then stayed with Children of Fire for the skin to fully heal. This was made more difficult by the boisterous behaviour of little Raeez, one of the totally blind boys at
Children of Fire's school in Auckland Park. Despite a dressing being knocked off, no serious damage was done.
Sicelo had a very happy sixth birthday at our school with cake, candles, new
Spiderman pyjamas and all. It was the first birthday party he had ever had.
The little boy was also invited to stay for the weekend at the home of an
occasional volunteer - something which he looked forward to a great deal.
Then, simply because of the boy's appearance, the husband of the volunteer
refused to let him visit.
When Sicelo asked why, we gently explained to him that some people remain
highly prejudiced about appearance, but that the invitation had been genuine and the woman was very upset that
she was unable to keep her promise. He accepted the explanation with the
stoicism that most of the burned children learn to survive.
Eyes
Sicelo was then taken to see Dr Chris van Niekerk MBChB MMed (Ophth) in his
practice based at the Netcare Rehabilitation Hospital in Johannesburg. Dr
van Niekerk said that in order to be able to operate inside the eye, further
eyelid surgery was needed. Sicelo first needed to be able to fully close his
damaged eye.
Sicelo's good eye doesn't close when he is asleep. He sees well
with one eye but the other eye has a cataract due to the heat of the fire.
The charity hopes to arrange a corneal graft in the future because we believe there
is a chance to retain Sicelo's eye and to improve its appearance and
function.
Plastic surgeons at Joburg Gen initially talked of removing his eye and
putting in a prosthesis (a false eye). This is our last possible option.
Another arm
Sicelo's right arm is amputated through burns just below the shoulder. The
little boy's heart's desire is to have another arm. His hairline is peculiar
but fixable some years after the boney deficit is dealt with.
He had been accompanied by Children of Fire's UMashesha volunteers Amelia, Jimmy, Michael and Tristan for several brief visits
home and his mother commented: 'Sicelo is a much happier boy since he's been
staying with Children of Fire. And he is starting to speak good English now.
He is even teaching me.'
Sicelo went into Johannesburg General Hospital again on
Monday May 24th 2004 for upper eyelid surgery on his right eye and surgery to lift his contracted lower lip.
In July 2004 he was again in hospital for a brain scan to prepare for surgery
later in the year and he went for a checkup with the ophthalmic surgeon as
well.
On October 27th 2004 Sicelo returns to ward 275 for a pre-formed plate to be
inserted in his skull, to fill the hole that he has lived with for more than
six years since his initial injury.Once the hole is filled, Children of
Fire will look at Sicelo's chances for tissue expansion in future. The charity buys the tissue expanders for between R3000 and R4000 for children operated on in Johannesburg.
Sicelo has a boney deficit in his forehead where bone was reabsorbed due to the intense heat of the fire, but his brain is not
affected.
The boy had not been vaccinated at all. Children of Fire arranged this for him as well as his booster doses.
The family
Matsiliso Happiness Maduna (27) has no other children. She was 21 when her son was born. She is not working. She is educated to Grade 11 (Std 9). The family is supported by Sicelo's maternal great-grandmother Augustina Maduna's pension, occasional money from his maternal grandmother Cynthia Sibongile Kubheka (born 1954), Sicebo gets a child support grant (approx R160) and Sicelo gets R700 a month disability grant. The members of the household are: Matsiliso (27), Sicelo (6), Nthabiseng (26), Sindiswa (20), Jabulani (19), Nomathemba (19), Augustina, Sicebo (6). (Cynthia lives in Newcastle as a housewife and has remarried. Despite her surname, she is not related to Sicelo's father). Both parents of Jabulani, Sindiswa + Sicebo died - so their grandmother has to raise them (the father died early, the mother after an ill-defined hand-arm-sickness). The other two are Cynthia's children as well.
Education
Sicelo is in Grade 1 at the Johannesburg School for Blind, Low Vision and Multiple Disability Children and occasionally also attends the Phembindlela Primary School in Volksrust, Mpumalanga.
Medical Treatment in Mpumalanga
Majuba Memorial Hospital can treat certain patients; otherwise the choice is to travel to Witbank or Kalafong.
Inspector Khehla Andreas Vilakazi (age 32) of SAPS Training Newcastle, took an interest in the little boy as well as Catherine Nzimande, a journalist with the Newcastle Advertiser. They first asked Children of Fire to help.
There is no family history of diabetes but Sicelo's grandmother has high blood pressure. When asked about epilepsy,
Matsiliso said: 'Sicelo says that he is tired. He throws himself down. Then it appears as if his 'brain-pulsing' stops.' If the problem takes longer than 30 minutes, they take him to the clinic (open 8am to 4pm Monday to Friday). It first seemed to happen after the brain tissue extruded the boney deficit. It happened on average once a year but did not reoccur since 2002. Early
in 2004 his neck started to swell - he had medication from the clinic and the swelling went down. It was worse in the early mornings but Sicelo's mother had no idea what the problem was and, it seems, did not ask the clinic about it.
Home
The family home is a 4-room (two bedroom) brickbuilt house with a flushing lavatory and electricity (prepaid meter). Sicelo can use the lavatory himself but when we first met his mother, she said 'he is scared that he is going to fall in'. At home he used to sleep in the same bed as his mother. He sleeps through the night and will ask if he needs the potty.
Diet
When he is with his mother Sicelo usually eats tea and bread for breakfast; he doesn't like cabbage but lunch
is usually tinned fish and pap (maize meal); supper is typically chicken or boerwors sausage (not spicy) and rice. When Sicelo is with Children of Fire, he likes going out for fish and chips at the De La Crème restaurant in Melville, for chicken at Nandos or bratwurst at the Wurstbude, especially if followed by icecream or cake and milkshakes.
Sicelo's maternal grandmother would take over as parent if Matsilo Happiness Maduna died.
Dogs
Sicelo has a dog at home that he loves but the mother did not know the dog's name! Sicelo also loves his Johannesburg dogs Benjamin and Comet too.
Johannesburg School for Blind, Low Vision and Multiple Disability Children
During 2004 Sicelo studied lots of different topics at school. His teacher Dimakatso Morifi wrote:
He understands that energy is the ability to do work, e.g. he uses energy to move a chair.
He knows that solar energy comes from the sun.
He can explain that he feels cold when he waves cardboard towards his face.
He cannot exactly tell where wind comes from but he understands that wind is moving air.
He learned about friction, e.g. he can produce heat by rubbing his hand on the table.
He is able to explain that furniture includes chairs, tables and beds which are put in the house.
He can mention the furniture that we find in the kitchen e.g. table, fridge, cooker.
He knows the importance of having furniture in the school e.g. desk - we put books, pencils, pens on them and write on them.
He knows that a clock has two hands.
He can tell the time in hours e.g. 2 o’clock.
He is still learning how minutes and seconds are shown on the clock.
He can mention some of the animals which are found on the farm e.g. Cow, horse etc.
He knows that an elephant is the heaviest animal on land.
He knows that many farm animals eat grass.
MATHEMATICS
If you compare the ages of the van Wyk family (his classmates), Sicelo is able to mention the oldest person and he can also point out the youngest.
He can write numbers in order from 1 - 19.
He will write 02 instead of 20, but he knows that 20 consists of the numbers 2 and 0.
He can add up numbers on his own e.g. 18 + 2 = 20
He can also add up more than 2 numbers and gets the exact number e.g. 8 + 4 + 2 =14
He is able to solve a problem on his own e.g. if 5 men eat 4 loaves of bread each, how many loaves are needed? He got 20 as the answer.
He knows the difference between a whole and a half and can explain that when a whole object is cut into two equal parts, it is called a half.
He can cut a circle into two equal halves.
When given a random sample of numbers can point out which is bigger, e.g.
2, 1, 5, 8, 3, he knows that 8 is the biggest number.
He knows that 1 is the smallest number.
He knows that 2 is the answer to 10 divided by 5.
He knows that 2 x 5 = 10.
ENVIRONMENT
He can mention the rooms, which are found in the house e.g. bedroom, kitchen etc.
He can classify and sort furniture.
He can mention some of the uses of farm animals e.g. cow as a source of food for milk and meat.
He knows that a farmer sells a cow in order to get money.
He understands that solar energy helps plants to grow because plants need warmth in order for them to grow.
He can tell the length of time for some actions like brushing teeth.
ORIENTATION
He knows that stamps are sold at the Post Office.
He knows that you can send a parcel to someone through the service of the Post Office.
He knows that we post a letter in the postbox.
He can mention some of the tools which are used on the farm e.g. rake, wheelbarrow.
He knows that a wheelbarrow is used to transport tools on the farm.
He can build models of furniture e.g. table, chair, by using a cardboard box, egg box and cardboard tube.
MUSIC
He understands the importance of meeting with new people and having friends whom really care about him.
He likes to sing along to many songs.
He can sing some of the songs from the Children’s Playground Favourites CD e.g. ‘How much is that dog in the window?’
He is able to follow a rhythm.
He likes playing with musical instruments such as tambourines and drums.
ARTS
He can wet soil and make it smooth. He can make a round shape and squeeze it till it turns into one long object.
He can also make a boat shape with the soil or clay.
He can make his own toy watch by using string, cardboard and safety pins.
STORIES
He prefers listening to people reading story books rather than to taped-stories.
He can answer questions about a short story, but he forgets easily if he listens to long stories.
EXERCISES/PHYSIO
He can pull himself forward and backward on the rolling exercise board.
He doesn’t like tilting on the large rocking board as he is afraid of falling off.
He can roll from his stomach to his back.
He can place his hand on his hips and bend forward at the waist in a bouncing motion.
He can stretch his arm to the side.
He can walk forward on tiptoes with his hand overhead.
GENERAL BEHAVIOUR
Sicelo is a good boy, a little bit cheeky and a great comedian.
He likes sharing toys with the other pupils and he listens and follows instructions given to him.
His English improves the more he speaks it.
His reading will be improved further if he is read to each night at home and is also asked questions about the story.
Sicelo enjoyed the special Heritage Week programme combined with a burns camp from September 27th to October 1st 2004 especially meeting TV presenter Prim Reddy and a Member of Parliament as well.
Sicelo at Nipika, Canada.
Sicelo had the chance to explore part of the Canadian Rockies at Nipika, as part of the charity's first Canadian outreach for burns survivors in September 2005. In early November 2005 we hope to begin the process of a tissue expansion on his head, to start rebuilding his nose.
Sicelo paddles canoe
Sicelo wwrafting
Sicelo in Tristan's arms
February 7th 2006 on a visit to Cape Town.
Photographer: Gary van Wyk
Sicelo home visit 23rd June 2006
HomeVisits 2006 - the gloomy kitchen in Volksrust and even Sicelo's dogs are aided by Children of Fire.
Sicelo December 2006 just after second batch of nose surgery
Sicelo May 2007 Sicelo's nose surgery did not work as planned and he had to wear nose stents which looked like macaroni for much of the time, to keep the nostrils open in March 2007. The nose will be operated on again in late May 2007 at Johannesburg General Hospital.
Mugg & Bean prize giving
In March 2007
Auckland Park duo Bronwen and Sicelo helped out restauranteurs Mugg & Bean with a prize giving in Sandton for their best people in franchises across South Africa.
Sicelo drank Appletizer, have first double-checked that the healthy fizzy apple juice was definitely not beer. He learned the system of several rows of cutlery and other dining etiquette. And despite having to pop all his anti retrovirals just before dinner, he thoroughly enjoyed his role as eight year old awards man.
Here he is presenting Mike Fowler from the Constantia with his award as Marketer of the Year.
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