Six years ago we met a little girl called Irene Peta. Now she is 15 years old in Grade 8 at Hope School in Parktown, Johannesburg, South Africa and Children of Fire is still helping her.

We saw her through controversial surgery and vastly improved her quality of life.

At school she excels in Arts and Culture, does well in Life Orientation, Natural Sciences, Human and Social Sciences, and Afrikaans as a second language. Irene is doing less well in English (but the school is strongly Afrikaans) and she is not too good at Technology. Her weakest marks are in Economic and Management Sciences and in Mathematics. In March 2004 we might pay Jimmy Mathye, one of the brighter UMashesha volunteers, a small fee to help her with mathematics at weekends as there is no one among her relatives who will take an interest in her school work.

Injury

Irene was burned at the age of 11 months in a shack fire. Her mother and father died in the fire, allegedly caused by arson. She has facial scarring and lost most of her legs and her backside in the fire. She was treated at Johannesburg General Hospital and at Edenvale Hospital. Doctors performed a colostomy and kept her on body waste bags for the next decade. Irene hated the bags and said they bothered her more than being in a wheelchair.

Her left leg bones grow as the amputation is below the knee, and so have to be sawn off periodically because skin growth doesn't keep up with the lengthening tibia. This is likely to continue until she is 18 years old and has finished growing. The remains of her right leg were wasted through lack of use and through the hip being fused. This came about largely by no plans being made for physiotherapy when Irene was small, and no understanding of such matters by her illiterate grandmother.

She goes to the Hope School for physically disabled children in Parktown. The school has a stunning view across the biggest artificial forest in the world - i.e. Johannesburg. It is adjacent to the exceptionally affluent Westcliff Hotel and yet is Monday-to-Friday home to many children from extremely poor backgrounds. The beautiful setting lifts one's spirits on even the most difficult of days.

Irene typically stays with her grandmother Maria in a two-room house in Alexandra township, every weekend. And Irene sees her sister once a year, in the rural areas near Pietersburg, now known as Polokwane, in the Limpopo province.

The South African government has cut back on funding for the Hope School and so, where pupils used to only go home once a month, now it is every Friday. This causes great hardship to many families as the whole disability grant gets spent on transport and there is nothing left to meet children's other needs.

Surgical history

The charity organised for Irene to be examined under general anaesthetic in early August 1999 and arranged for Irene to have her colostomy closed in March 2000 at the Johannesburg General Hospital. Unfortunately ill-informed outside intervention prevented the intended operation in March and it took until September 2000 for the Trust to secure in loco parentis authority to be able to assist Irene fully. In November 2000 her colostomy was closed by Dr Peter Beale and in December 2000 Professor Einhard Erken broke the bones in Irene's right hip and re-set it at an angle of about 50 degrees. Dr Mark Eltringham was also involved in consultations.

The colostomy closure required Irene to wear small adult-size nappies as she lost her sphincter when she was burned and so only had partial continence. The nappies then cost about R160 for a pack of 15 and were funded by the charity for some months. Irene lived with trustee Bronwen Jones between surgery, as her grandmother was old and frail and it was difficult to keep the home environment sufficiently clean.

Irene had a skin graft placed just above her right hip on Wednesday July 11th 2001. The skin was taken from a donor area on her left thigh. The graft took well and she was discharged into the charity's care about a week later. The purpose of the operation was to release the keloid scarring and contractures that, among other factors, still prevented Irene from sitting easily.

Irene had further facial surgery a year later.

After Irene's hip resetting, we considered an appendicostomy. This would allow Irene to use a normal lavatory and to flush-out her own system at a time of day that suited her. She would then not need nappies and would not need waste bags. The disadvantage of such a procedure, we learned, are the small opening through which a little tube would pass, frequently can become infected. And the home in Alex has no bathroom.

We had also considered giving her an artificial (electronic) sphincter when she became a young woman, but learned that Irene does not have enough bottom left to hold such a device. We then consulted gastrointestinal specialist Prof. Julian Oettle at the Helen Joseph Hospital in Johannesburg, who advised that a regime of several medicines (Amitryptilene, Lopiramide and Fybogel) could regulate Irene's system in such a way that she might eventually not need nappies at all. Instead she would be intentionally constipated and would be able to feel her bottom "working" again for the first time in years. A very low level antidepressant would be used to relax the appropriate muscles.

The problem with this medical regime for a long time was Irene's poor "compliance". Essentially when Irene was at school she took the medicine and when she was with her grandmother she didn't bother and would have accidents. Slowly but surely however, the colon was retrained to "think" and anticipate. By early 2004 there was better success than anyone could have hoped for.

Irene no longer needs any medicine and any nappies. She is flourishing. The difference between committing a child - and then an adult - to wear a colostomy bag for the rest of her life versus the joint efforts of Prof. Julian Oettle and trustee Bronwen Jones to get Irene onto a medical regime and then her re-educated colon weaning her off it, should be explained to the medical professionals who effectively told Children of Fire not to interfere. The attitude of the surgeon who did the original colostomy, was begrudging at best. The "team" at Irene's school in 1999-2000 said don't fix something that works and vigorously opposed any change. But three to four years down the line the individual therapists and nurses have had the good grace to say "thank you" and understand why Children of Fire fought for Irene. But colostomies are horrendous things that no one should have to live with if there is any other possible option. And the people who pretend that they have no odour, should sit in a car with the windows closed, alongside someone who wears one. Some health care workers might like to sit back and think how that the bag denied Irene the chance of marriage, a sex life, and children. That it made it almost impossible for her to go swimming or to wear various attractive clothes. Anyone who reads the Living with Irene section of the website will know the success of 2004 required endurance through a terrible few months after colostomy closure. Now there is no doubt that it was worth it.

The charity will always explore every feasible option. Ideas become reality where surgeons and medical specialists, too, have a passion for their work. Irene is still a badly burned girl with almost no legs, but she has an incredible joie de vivre. Irene herself says that a large part of her confidence comes from the chance to be more normal and not to forever focus on dealing with her body waste. She will inevitably have some scoliosis (curving of the spine) because, despite the charity's best endeavours to secure chair liners and specialist intervention for Irene, she often doesn't do what she is advised to do. Irene doesn't want a hump on her back but hasn't got enough self discipline to sit properly.

Children of Fire wonders if the health department would like to reimburse us - or Prof Oettle's department - for sixty years worth of colostomy bags that she would have forseeably have continued to use for the rest of her days?!

Age

Irene has three different birthdates recorded at three different hospitals. With the vagaries of South African record keeping she is probably two years older than her school age. We guess that well-meaning people may have found it easier to get her into school if she appeared to be younger on admission.

Medical supplies

Children of Fire decided to secure Irene's medical supplies through the state system, as we envisaged her need could be life-long and there was no certainty that the charity would survive as long as her. However collecting medicines from any Gauteng province hospital was not easy. Whatever was prescribed by Prof Oettle was not what was dispensed at the dispensary. It took a minimum of three phone calls to get the right file delivered to the dispensary and then the correct material was not handed over. Once she was given a medicine that did exactly the opposite of the one that was actually prescribed. Only by the charity always checking drug names in an appropriate text book was the dispensary's error recognised and the substance changed the next day. In 2004 we need new medical dictionaries particularly to keep up with all the new drug names and their variations between countries.

It typically takes five hours to queue for medicine at Helen Joseph Hospital. The charity approached the authorities and was given permission to collect supplies more swiftly but this still didn't overcome the problem of having to make several journeys to secure one month's full prescription. Now that Irene is off medicine, the time is freed up to assist another child. The charity has looked at the possibility of building a wheelchair ramp and a small bathroom onto the little Alexandra house, as there is only a water tap in the yard and sewerage is tipped from potties into a pipe in the ground. We looked at cost, design around the dimensions of a wheelchair, and at municipal regulations. A local councillor offered to assist in late 2000 but by February 2004 had done nothing despite many requests in the intervening time period. As the property is owned by the council, Irene's security of tenure when her grandmother dies, is uncertain. And the charity cannot fund building onto a council-owned building if Irene would not get long term benefit from such an investment.

Irene still does not like staying with her grandmother at weekends because her aunt sells beer from the little house and there is no private place for Irene to clean herself. Irene used to have prosthetic legs with which she walked a little, but this was not possible while the tibia protruded, because the legs were too painful to wear. She could not sit down with the legs on; and even with the legs off, until her hip was reset, Irene slumped like a sack of potatoes on a sofa. Her old wheelchair had to be sawn in a special shape to allow her to even sit reasonably upright during lessons. Choosing to reset the hip meant that Irene would never wear her legs again. But Irene said that she rarely wore the legs, except sometimes in Alexandra as her wheelchair could not fold and so was usually left at school. When we arranged for the wheelchair to be transported to her home, Irene's grandmother objected that it took up too much space. The charity would still like to buy an electric wheelchair for Irene. They cost in the region of R25,000 but more research is needed as to maintenance and transportability. The charity funded a chair liner for Irene in May 2001, especially moulded by an occupational therapist, to fit her then body shape and to try to help her sit with the optimum posture. Irene was reluctant to wear the straps that helped her sit upright. We paid for an improved version in August 2001.

While it is no longer an option for Irene, any research papers on the construction of artificial sphincters would be appreciated or on the techniques required to use and place an electronic sphincter. They should please be emailed to firechildren@icon.co.za Medical research into protruding bones of amputees would also help us to help other children.

A local supermarket, Pick 'n' Pay, still buys some clothing for Irene, through the kindness of its employees. There is no guarantee that this can continue throughout Irene's life, especially as there is usually little active public sympathy for disabled adults. Her grandmother's home is so poor that Irene used to share a single bed with Maria. Through the Hope School we managed to secure an extra bed for Irene in mid 2001 but her grandmother complained that it takes up too much space. There are space-saving beds available for less than R2000 that could be a viable alternative. The house has electricity but the wiring does not look safe.

Irene likes reading, pop music, boys and television.. especially all the soapies. She has a remarkably feisty nature. She will not let herself get depressed about her disabilities and she is always ready to make a joke and fool around. She benefited from going on the Burns Camp in late September 2003, particularly as she enjoys the company of the UMashesha volunteers and that of Mfundo Ntamehlo, a "home boy" from Alexandra.

Some older pictures of Irene