A COUPLE face a legal right-to-life battle for their terminally-ill daughter against doctors who plan to let her die.
A judge will be asked to approve barring little Amber Hartland from a hospitals intensive care ward if she falls ill again.
Amber, six, has a rare genetic condition but has defied the odds by living longer than any other known sufferer.
Now her devastated parents Nick and Lesley have been told her short life is over.
Doctors say they will seek a court order to stop her being admitted to Cardiffs University Hospital of Wales in the future.
But the distraught couple vowed: No one has the right to play God with our child.
Heartbreak ... Lesley and Nick
Nick, 31, and Lesley, 42, provide round-the-clock care at home for Amber, their only child. They insist that she still has a good quality of life despite her cruel condition, Infantile Tay-Sachs.
The brain disorder has left Amber, of Cwmbran, South Wales, almost totally paralysed, unable to speak and severely epileptic. But she can see and hear and communicates with coos.
Her survival is due to a revolutionary drug Zavesca, which costs the NHS £2,500 a month.
Her parents insist she is not a drain on NHS resources. The only additional treatment she needs is intensive care when she gets chest infections. This has happened five times in four years.
The last time was last week when her parents were given the b****shell news.
Decide
Lesley said: A consultant told us, Shes reached the end of her life and wanted us to agree to turn off her life-support. We said no and he said, Well, well have to let a judge decide.
Nick and Lesley, who believe the threat has been made on cost grounds, will move to another area if they lose.
Ian Lane, medical director of the Cardiff and Vale Trust, said: We do not take decisions about care lightly. We will continue to put Ambers best interests first.
We are asking the courts to decide on the best course of action for her future care.