A six-year-old girl with a severe brain disorder whose parents were told she would not be given any more life-saving emergency treatment has died at home.
Amber Hartland had been in intensive care five times in four years, and doctors told her parents Lesley and Nick that she would not be admitted for life-saving procedures in future.
But her parents decided to fight a legal battle with the hospital to ensure that their daughter was given treatment if she needed it.
Amber suffered with Infantile Tay-Sachs, which left her almost totally paralysed, unable to speak and severely epileptic.
But her mother said in July that her daughter led a happy life in between bouts of illness, and could communicate with groans and facial expressions.
Mrs Hartland was unhappy with the hospital’s decision and pledged to contest the case “with every breath in my body”.
However, Amber died before the courts could consider her case, surrounded by family at her home in South Wales.
Mr Hartland said: “We always maintained no one was going to decide for Amber and that she was going to decide when she had had enough, and she did.”
He added: “We are so proud of Amber.
“She was the most amazing person and she touched everyone. She was a happy little soul, and caring for her was the best experience of our lives.
“Up until the end, she always found a way to communicate with us that she was happy, and she very rarely moaned.
“When she was first diagnosed with the condition before her first birthday, doctors said she would not live for another year, but she had such a will to live. In the end she just got tired and she chose to go.
“The pain we feel at the moment is unbearable, but it has been worth it.”