Foundation Ambassadors
The KPF Ambassadors are a crucial group of individuals – and include burns survivors or those with scar disfigurements – who are key to developing the awareness of the Foundation’s support to this community and to the wider public, and who also help raise much needed funds. Ambassadors are testament to, and an embodiment of, the Foundation’s mission – living normal lives with burns or scar disfigurements.
Chantelle
AVM (Arteriovenous malformation) on the nose
Chantelle has been bullied nearly her whole life because of a facial birthmark which spread across the centre of her face. It wasn’t until she was 14 that doctors realised that her disfigurement was in fact a life-threatening growth of arteries and blood vessels, known as an AVM. As puberty hit, the vessels began to multiply uncontrollably.
AVMs often pass high volumes of blood and are extremely unstable. Stress or a minor knock can lead to a fatal haemorrhage. Surgeons have embarked on a radical new procedure that will ultimately lead to the removal of the entire growth. No one knows how much of Chantelle’s face the growth has claimed and until the surgery is over, how she will look.
Chantelle recently represented KPF at the Disco Inferno which raised £1000 for the Foundation.
Adele
An epileptic fit in a hot shower left Adele with 46% burns on her arms and back
Adele was a ballet student at a prestigious private school when a terrible accident changed the course of her life. No-one knew she had epilepsy before this incident happened five years ago. Adele was taking a shower before a Christmas shopping trip with her mother, when suddenly she suffered an epileptic fit.
During the attack, she knocked the tap and collapsed under hot water. Her mother discovered her under the still-flowing scalding water. She was rushed into the specialist burns unit at Chelmsford where she received emergency and reconstructive treatment in the intensive care unit.
Adele was left with severe scarring on her back and arms. Deciding that the physical perfection demanded by the ballet world meant her dreams of dancing for a living were over, she adapted. Instead, she finished her schooling in the general performing arts, took her A levels, got straight As and has just started a natural science degree at Durham University.
Adele is now finished with surgery and thinks she should be accepted as she is. Adele’s mother wrote to Katie to tell her about her daughter’s experience and the dilemma they now face – it was her letter, among many others, that prompted Katie to set up the Foundation which led to the Channel 4 series.
Recently Adele released a track with Eden Voices, “True Colours” with proceeds going to the Foundation.
Emily
At 7 years old Emily suffered 70% burns
Emily was burned during a house fire while on a family holiday in France. Her younger brother was found quickly and escaped with relatively few injuries but Emily was trapped under molten ceiling tiles for some time before she was rescued, suffering burns to such an extent that her heart stopped several times.
Doctors believe she managed to survive only because she was so young. Emily spent four months in a French hospital and was one of the first Irish patients to use a plastic facemask to help smooth the scarring on her face. Over the years, Emily has withstood countless skin grafts over her body and believes she will continue to have treatment throughout her life.
Despite her severe injuries, Emily’s parents were determined not to hide her but to get her back into the swing of life as soon as possible. Returning to school, Emily was accepted without problems and is still part of a tight knit group of friends that have known each other since primary school.
With a law degree, masters and an internship in Washington DC under her belt, Emily has tried never to let her scars get in the way of what she wants to achieve.
Emily has run a mini-marathon, raising nearly £600 for the Foundation, and will run another in the summer.
Will
40% burns in BBQ fire
Will was badly burnt when a Bank Holiday barbeque got out of control and he was engulfed in a ball of flames. Rushed to the specialist burns unit at Frenchay Hospital, Bristol, Will was on the critical list for two weeks during which he endured eight skin graft operations to repair the burn damage to his neck and torso.
The shock of the incident has left Will to cope with both the immense pain of his injuries and worry over missing his GCSEs. An outgoing, boisterous boy who loves wakeboarding and biking, Will has had to adjust to different activities and concentrate on rebuilding his life.
Will is doing a Skydive for the Foundation.
Amit
Neurofibromatosis Type 1
Born in Assam, India, Amit’s condition originally manifested in darker skin patches. But when his facial tumours developed, the whole family moved to Britain to seek the best treatment for Amit.
Amit’s condition is incurable and since he was a little boy he has undergone many operations to “de-bulk” the tumours on his face, which will never stop growing. At fourteen, Amit’s left eye had to be removed, damaged irrevocably by the tumours. He now has a prosthetic eye in its place.
Amit’s dad, who died last year, believed that going to university was the key to improving his son’s prospects. When Katie first met Amit, he was about to fulfil that wish and be the first of his family to go. Last Autumn, he started an economics and marketing degree, hoping to eventually work in the business world.
Amit recently organised a successful Talent Show in Birmingham to raise funds for the Foundation.
Kayleigh
Pfeiffer Syndrome
Kayleigh has a rare genetic syndrome that fuses some of the skeletal joints in the womb, and has affected her facial bones and the bones in her hands and feet. She has withstood surgery and treatment her whole life, including a procedure when she was just a toddler which expanded her skull to prevent permanent brain damage. However, Kayleigh’s face was still malformed, and it was only when she reached seventeen and her skull had stopped growing, that her medical team were able to tackle this problem.
At Great Ormond Street hospital, surgeons fitted a metal frame to her head, which, millimetre by millimetre, painstakingly attempted to move the mid section of her face forward and correct the misalignment.
Kayleigh has recently supported a school presentation for funding from the Youth Philantrophy Inititative.
George
Suffers from an inherited skin cancer affecting his face and throat
George suffers from squamous cell carcinoma which affects the nerves on his face and has led to the loss of some nose tissue. However, he also has a second form of cancer, a rare hereditary skin disease called Ferguson Smith syndrome that manifests as raised spots. Mostly these spots are benign, but can develop into unsightly growths that then need to be surgically removed.
George has already had his nose partially removed but his facial cancer continues to grow. He’s now squaring up to extensive surgery to tackle its spread. The operation will at least extend, if not save, his life but may leave George very badly disfigured. George could wake up to find the surgeons had no choice but to remove parts of his nose, jaw, cheek and palate.
His father also had Ferguson-Smiths, and it cost him his nose. George saw the hugely negative impact this had on his father’s life and wants to help change societies attitudes so that his children don’t have to have the impact of taunts that he went through as a child.
George has also been offering great support by getting contact with people that have emailed into the charity with Ferguson Smiths Syndrome.