IN 10 days, inspirational schoolgirl Faith Ong should have been celebrating her 15th birthday.
Instead, this Friday, her parents Trevlin and Kim will bury her at Astley Bridge Cemetery after she lost a life-long battle against liver disease.
Now they are appealing for more people to carry organ donor cards so that others can avoid the heartache they are suffering.
Turton High School pupil Faith was born with the relatively rare condition biliary atresia, in which bile builds up in the liver and poisons it.
Surgery failed to solve the problem and her family were told that her only chance of survival was a transplant.
Before she was one year old, Faith had endured two liver transplants and battled her way through pneumonia.
Her parents, both nurses, moved to Bolton from Blackpool and, despite having to constantly take drugs to prevent the transplant being rejected, Faith was determined to live a normal life.
“She was lively at home but quiet outside. She was a thoughtful child,” said her mother, Trevlin.
“She never let anything stop her. She took life head on and was an absolute joy. She never complained and just got on with it. We never wrapped her in cotton wool.”
Faith loved ice skating and became proficient enough to win awards.
Three times she competed in the Transplant Games, winning medals for running and the long jump.
Faith also found time to help other children with liver disease, offering support and advice via websites.
After years of relatively good health, Faith became ill again at the beginning of last year, suffering repeated infections and having several stays at the Royal Bolton Hospital and King’s College Hospital in London.
“Ward B1 at the Royal Bolton was excellent. The staff were all brilliant with her,” said Mrs Ong.
In October, doctors told Faith's family that she would need another liver transplant.
“We managed to get her home on Christmas Eve and then she had to go back into hospital on Christmas Day,” said Mrs Ong.
On Boxing Day, Faith was transferred to King’s College Hospital but a donor liver did not become available and she died last Tuesday with her parents, 12-year-old brother, Robin, and older step brothers Timothy and Nicholas at her bedside.
Mrs Ong said that until two days before her death, Faith was remaining optimistic about recovering and fulfilling her dream of becoming a microbiologist.
“She was really very stoical in her approach to her illness and never let it stop her,” said Mrs Ong.
“Because she put up with so much it made her so caring. She could empathise with people.”
She said that most people associate liver disease and the need for transplants with adults, especially alcoholics like George Best, not realising it is an illness which can affect children.
“There are a lot of children who suffer from liver disease but it is not the first thing people think of when they think about transplants,” Mrs Ong said.
All of Faith’s family carry donor cards and Mrs Ong believes if more people carried them, children like Faith could be saved.
Faith’s funeral will be at 10.30am on Friday at St Paul’s Church, Astley Bridge.
Her parents have asked for the congregation to wear bright colours and donations in lieu of flowers to be made to the Children’s Liver Disease Foundation.
“We want it to be a celebration of Faith's life,” said Mrs Ong.
To be included on the organ donor scheme visit www.uktransplant.org.uk or call the 24 hour hotline on 0845 60 60 400
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