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 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 mother Elane de Moraes Lobo said through tears of joy.
A rainbow framed the precious moment when the family - after leaving the hospital "not looking back'' - arrived at their freshly painted Orewa home yesterday.
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 and even breathe unaided because of 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,'' Ms de Moraes Lobo said, tightly holding partner Peter Bircham's hand.
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,'' Mr 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 requires a registered nurse for respite care and an overnight carer.
Once a month Ana-Carolina will need to go back to Starship for check-ups.
Until they find the extra staff, her parents will be required to provide full-time care.
National advocacy group CCS Disability Action has 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.
Mr Seymour accompanied the family to Orewa yesterday afternoon and said it was an honour to be part of the occasion.
"I really admire them and I'm just so happy to see their joy,'' Mr Seymour said. - NZME
