Page last updated at 12:24 GMT, Tuesday, 4 November 2008

Girl, 6, dies before court battle

Amber Hartland and her mother Lesley
Lesley Hartland had argued that her daughter had a 'right to life'

A six-year-old girl with an incurable brain disorder has died as her parents were facing a legal battle with a hospital over her care.

Amber Hartland from Cwmbran, Torfaen, died on Sunday night.

She suffered from a rare brain disorder, Infantile Tay-Sachs, which left her almost completely paralysed.

In July, doctors had told her parents she would not be admitted to intensive care in the future. The matter had yet to come before the courts.

Amber was prone to chest infections and needed intensive care treatment in hospital whenever she had one.

The condition left the little girl, who was not expected to live more than a year after it was diagnosed just before her first birthday, unable to speak and with epilepsy.

Her parents Lesley and Nick Hartland said doctors at the University Hospital of Wales in Cardiff had told them Amber was at the end of her life and a judge would have to decide on her future care.

Cardiff and Vale NHS Trust subsequently asked for a court to decide "on the best course of action".

Nick and Lesley Hartland
She was such a happy little soul and we miss her so much now
Nick Hartland, Amber's father, pictured with her mother Lesley
Mr Hartland said his daughter had spent Sunday daytime watching Disney cartoons before her death at home in the evening surrounded by family.

"We are so proud of Amber," said Mr Hartland. "She was the most amazing person and she touched everyone.

"When she was first diagnosed with the condition before her first birthday, doctors said she wouldn't live for another year but she had such a will to live.

"In the end she just got tired and she chose to go."

Mr Hartland said the dispute with hospital chiefs had made life difficult for his family.

"We had all this court action hanging over our heads over the last few months," he said.

"We always maintained no-one was going to decide for her and that she was going to decide when she had had enough and she did."

Mr Hartland added: "The pain we feel at the moment is unbearable but it has been worth it.

"It has been an honour knowing her. She was such a happy little soul and we miss her so much now.

"All the pain now is worth it."

Ian Lane, medical director of the Cardiff and Vale NHS Trust, said: "On behalf of the trust, I would like to offer my sincere condolences to Amber's family for their loss.

"This is a very sad case and we sympathise with every parent who faces such a difficult set of circumstances."

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