Amber Hartland, from Cwmbran, Torfaen, has Infantile Tay-Sachs, an incurable brain condition.
A couple say they face a legal battle with a hospital to keep alive their six-year-old daughter in future.
Amber Hartland, from Cwmbran, Torfaen, has an incurable brain disorder and needs intensive care treatment in Cardiff when she gets chest infections.
Her parents say doctors told them their daughter, who is on a ventilator, was at the end of her life and a judge will have to decide on her future care.
Cardiff and Vale NHS Trust said it put Amber's best interests first.
She is currently being treated for a severe chest infection in the paediatric intensive care unit at the University Hospital of Wales, Cardiff.
She was admitted on Thursday but by Tuesday, her mother Lesley Hartland, 42, said her condition was improving and she was expected to be taken off her ventilator in around a day's time.
Amber's incurable disorder called Infantile Tay-Sachs has left her almost totally paralysed, unable to speak and severely epileptic. However she can communicate with coos and can see and hear.
If we cannot find an intensive care unit in this country that will take her, yes she will die, she will choke to death
She is also prone to chest infections and has needed intensive care treatment for them five times in four years, say her parents.
Last Friday Mrs Hartland and her husband Nick were told doctors wanted to withdraw the option of her being put in intensive care and given life-saving procedures in future.
This is what the courts would be asked to decide upon.
Mrs Hartland also told BBC Radio Wales that a member of staff at the Royal Gwent Hospital in Newport had told them that Amber was costing other Gwent children money.
The Gwent Healthcare NHS Trust has been asked for comment.
"We believe it is about money. Amber costs money at the end of the day," said Mrs Hartland.
"But my father, my husband's mother and father, they have all paid their taxes and have never used the health service.
"Everyone is entitled to the health service."
Mrs Hartland said Amber has a full life between bouts of illness - and enjoys foreign holidays and an active life.
"Amber has a right to life," she added.
"Amber is a child who breathes oxygen like you and I, she has got a marvellous quality of life. We have taken her abroad, we have taken her to Center Parcs and we have got woodlands by the side of us.
"Amber enjoys her life.
"If we cannot find an intensive care unit in this country that will take her, yes she will die. She will choke to death."
It is understood that ongoing care costs are in the region of £2,500.
Cardiff and Vale NHS Trust, which runs the University Hospital of Wales, cannot discuss Amber's case in detail.
But Ian Lane, the trust's medical director said: "I want to stress that our top priority is always to provide the best possible patient care.
"My dedicated medical team have provided high quality and compassionate care to Amber, always putting her needs first.
"I can guarantee that she has never received less than the highest level of care from our trust.
"Amber is now receiving active treatment in our specialist paediatric intensive care unit and we will continue to put Amber's best interests first.
"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."
Normally, children with Infantile Tay-Sachs die in the second or third year of life.
The chairwoman of Cardiff and Vale NHS Trust's clinical ethics committee confirmed they had discussed Amber's case and as an impasse had been reached, they recommended the best way to proceed was to take it to court.
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