Today, for the first time in almost six years a little girl dressed in pastel pink with ribbons through her hair will wake in her own bed, at home with her parents.

Ana-Carolina, 6, has spent almost her entire life at Starship Hospital's intensive care unit and - until yesterday - was not allowed home.

"It is the beginning of life again, it's like freedom that we haven't had for nearly six years and the opportunity for Ana-Carolina to experience a normal life for the first time ever," her mum Elane de Moraes Lobo told the Herald through tears of joy.

The precious moments of the family leaving the hospital "not looking back" and arriving at their freshly painted Orewa home as a rainbow shimmered above were captured exclusively by the Herald.

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Since Ana-Carolina was 5-months old her parents have spent 20 hours a day caring for her at Starship, often sleeping only every second day.

Their "bundle of joy" lost the ability to move, speak - even breathe unaided, due to a neurological disorder called Guillain Barre syndrome, diagnosed when she was just months old.

Though she has the active and inquiring mind of any school-age child, Ana-Carolina remains almost completely paralysed.

But she continues to fight - communicating by blinking her eyes or with the limited use of her eye-controlled computer, and breathing through a ventilator.

"If we hadn't kept fighting for our daughter, we would not be here in our own home. It's amazing. I am speechless," de Moraes Lobo said, holding partner Peter Bircham's hand tight.

READ MORE:
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The little girl trapped between hospital and home
Paralysed Ana-Carolina's first steps into a virtual new world
More hurdles to bringing Ana-Carolina home after five years at Auckland's Starship Hospital

The pair were speechless as they wheeled their daughter to her pastel-painted bedroom, with soft toys covering the bedspread and animal illustrations on the walls.

"It hasn't really sunk in yet, it feels a bit surreal to be honest," Bircham said.

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In order to move home and ensure Ana-Carolina's safety, two part-time home support workers have been provided by the Ministry of Health.

However, the family still require a registered nurse for respite care and an overnight carer.

Once a month she will need to go back to Starship for checkups.

Until they find the extra staff her parents will be required to provide fulltime care.

Bircham, who hasn't had a paid job for almost all of his daughter's life, can finally return to work.

National advocacy group CCS Disability Action have lent the family the Orewa home for as long as they need it but they need to pay rent.

A Givealittle page has been created to support the family.

The couple previously lived in Parnell, where electorate MP David Seymour spent four years advocating for Ana-Carolina to move home.

Act leader David Seymour accompanies the family as they Starship hospital. Photo / Dean Purcell
Act leader David Seymour accompanies the family as they Starship hospital. Photo / Dean Purcell

Seymour accompanied the family to Orewa yesterday afternoon and said it was an honour to be part of the occasion.

"These guys have given it everything they had and are now effectively are starting a new life rebuilding from scratch. I really admire them and I'm just so happy to see their joy," Seymour said.

Ana-Carolina in her new bedroom with her parents Peter Bircham and Elane de Moraes Lobo. Photo / Dean Purcell
Ana-Carolina in her new bedroom with her parents Peter Bircham and Elane de Moraes Lobo. Photo / Dean Purcell