Ana-Carolina has spent almost her entire life in Starship's intensive care unit.
But despite being a tetraplegic, her condition doesn't have a name - and she's caught in a row between her family and the Auckland DHB over how to move her home.
She celebrated her fifth birthday on May 6 - a day that encompassed one of the few times Ana-Carolina has been out of hospital.
"It's been horrific," her mother Elane de Moraes Lobo says.
"It just takes a huge toll," added father Peter Bircham.
Ana-Carolina was a normal, healthy baby, but when she was four months old, her leg movements began to slow.
By the time she was 15 months, her parents were told it was best to allow a natural death, as NZ doesn't support fully-ventilated children.
But then something extraordinary happened - she began regaining feeling in her body.
"The last six months are a lot better than we realise - the adults have been a bit slow. She can now blink yes and no," Mr Bircham says.
Ana-Carolina's parents say she's all there on the inside, and a hospital is not the right place for her to be.
"There's children dying around her; it impacts her as well," Mr Bircham says.
The Birchams want to look after Ana-Carolina at home, and they've even had a transition plan privately produced.
But it hasn't been approved by the Auckland DHB.
Local MP David Seymour says her case reflects bureaucratic bungling.
"It is categorically a failure of the Auckland District Health Board to produce a plan that reasonably resources her to live at home, even when that would save a huge amount of money," Mr Seymour says.
It costs $1.6 million a year to look after Ana-Carolina at Starship, but if she's moved home it's estimated her care will fall to just a third of that.
The Auckland DHB wished Ana Carolina a very happy fifth birthday, and said it continues - with input from an independent expert panel - to work on the goal of transitioning her home.
The Birchams say they want a discharge date and a plan so their daughter can reach her full potential.
"The possibilities are endless, she could be the next Stephen Hawking," Mr Bircham said.
Now the family hopes when Ana-Carolina's next birthday rolls around, she'll be home-free.
Newshub.
