An inspirational young woman who was not expected to survive her first year of life has died – at the age of 26.
Kayleigh Moore had a rare condition where her organs were all the wrong way round – and was known as the ‘back-to-front’ girl.
The condition, called situs inversus totalis, meant her major organs were reversed, or mirrored, from their normal positions.
She was also born with a serious heart problem and spent three months in a coma before enduring a lifetime of medical problems.
But her proud mother, Eileen Lang, said her daughter defied her early prognosis and lived life to the full.
Kayleigh Moore had a rare condition where her organs were all the wrong way round – and was known as the ‘back-to-front’ girl.She was also born with several major heart defects and wasn’t expected to survive. In 1993, she underwent a heart transplant, which was reported at the time (above)
Kayleigh died, who died on Sunday, was awarded a Child of Courage Award at Westminster Abbey in 1993 by Princess Diana (pictured).Today, her family paid tribute to her bravery
Kayleigh, who died on Sunday in her mother’s arms, had been awarded a Child of Courage Award at Westminster Abbey in 1993 by Princess Diana.
Her mother Ms Lang, of Paignton, Devon, said: ‘A light has gone from our lives and Kayleigh will be loved and remembered forever.
‘We will miss our brave Kayleigh tremendously. She was strong, fun and always a pleasure to be around.’
Kayleigh was born with several major heart defects and wasn’t expected to survive.She underwent a heart transplant in 1993.
However, shortly afterwards she suffered two episodes of encephalitis which left her in a coma for three months and with learning difficulties.
‘Kayleigh (pictured) was strong, fun and always a pleasure to be around,’ her mother said
Her mother added: ‘With her strength and determination, she learnt to walk and talk again.
‘She had many years of good health where she enjoyed life to the full.
‘In her later life, her health slowly deteriorated and Kayleigh used her wheelchair more often – but her sense of humour and fighting spirit never left.
‘Kayleigh was so inspirational to many people, not only to the people who cared for her and the health professionals who were astounded by her medical achievements.’
At three months old in 1989 Kayleigh underwent a procedure at Bristol Royal Infirmary.
It was at the time of the Bristol heart scandal, when large numbers of babies died after cardiac surgery.
Ms Lang said: ‘We believe it wasn’t done adequately and it meant she remained in heart failure.
‘She then had to have a heart transplant when she was four, instead of in her 20s or 30s.
‘It is very complicated because then she had a rare reaction to the transplant drugs, and that caused her brain damage.’
The hospital denied any incompetence.
But in 2012 Kayleigh was awarded £450,000 by London’s Royal Court of Justice from the health authority after a lengthy fight for compensation.