Ana-Carolina's home after five years at Starship

6-Year-old Ana-Carolina de Moraes Lobo Bircham in her bedroom of her new home for the first time after spending her entire life in hospital. Video / Dean Purcell

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.

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.

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.

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

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

Family's fight to get home:

July 4, 2013:Peter Bircham and Elane de Moraes Lobo welcome Ana-Carolina into the world. She seems happy and healthy.

October 2013: Ana-Carolina rapidly loses the ability to move and starts struggling to breathe. She is admitted to Starship Children's Hospital and put on a 24-7 ventilator and feeding tube. Her parents work in shifts so they can be with her 20 hours a day.

August 2014: Intensive care clinicians at Starship recommend Bircham and de Moraes Lobo turn off their 15-month-old daughter's ventilator and allow her to die a "natural death". Her parents refuse, beginning a protracted battle with the Auckland DHB to be allowed to take their daughter home and keep her on a ventilator.

March 2017: Starship starts actively working on a solution to get Ana-Carolina home. Mid-2017 her parents - who have quit their jobs and taken out multiple loans so they can be with her - are forced to sell their Parnell house.

March 2019: CCS Disability Action offers the parents a rental home in Orewa that will be suitable for Ana-Carolina's needs, although it will need some modifications.

May 15, 2019: The date Ana-Carolina was meant to go home to Orewa. But her homecoming was delayed partly because the DHB could not find enough nursing staff to care for her.

August 1, 2019: Ana Carolina, 6, comes home to her family's new rental in Orewa. Her parents say they are "not looking back".