July 9, 2008
Dad’s Joy As ‘Right to Life’ Amber Goes Back Home
By Mike Gibson
A FATHER fighting for his six-year-old daughter's right to live spoke yesterday of his joy at her return home from hospital.
Amber Hartland suffers from Infantile Tay-Sachs, a rare incurable brain disorder that has left her almost completely paralysed.
She was admitted to the University Hospital of Wales, Cardiff, last week with a chest infection - but now doctors there say it is time for the little girl to die.
They are taking legal action to stop Amber being admitted to intensive care at the hospital next time she is ill.
Her parents Leslie and Nick, who look after her at home in Cwmbran, say she deserves the right to life, and that they have the support of well-wishers from around the world.
Mr Hartland, 31, said: "It's marvellous to have her home. She's doing really well.
"It's worn her out, being in hospital, but she seems pleased to be back. We're just trying to get back to normal now.
"The support from around the world has been fabulous. A petition has been set up, and a group has been set up for Amber on Facebook.
"We just hope that our daughter will be able to live, as long as she's comfortable, and happy and not in pain.
"As long as she enjoys her life, she should be able to have her life."
Mr Hartland said Amber has a light and sound sensory bedroom and garden, and is also looking forward to a trip to Lourdes later this year. A local Catholic school is raising money to fund the journey.
Mr Hartland said: "It's amazing of them. Their care and compassion has been amazing.
"Leslie is Catholic, but it's one of those places that's is just so special, because it means so much.
It will be amazing."
Amber's parents are now preparing to meet Welsh Secretary Paul Murphy on Friday to discuss the case.
Cardiff and Vale NHS Trust is asking for a court to decide "onthe best course of action", and Mr Hartland said the matter is currently with solicitors.
Ian Lane, medical director at the trust, said their priority is to give "the best possible patient care" and that they were putting Amber's best interests first.
He added: "In doing so, we are now asking the courts to decide on the best course of action for Amber's future care. This is obviously a very complicated and sensitive situation and we sympathise with every parent facing such a difficult set of circumstances.
"We do not take decisions about ongoing care lightly and work very closely with the family, providing as much help and support as possible when difficult decisions have to be made."
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