A little girl who has called Auckland's Starship hospital home for the last five years will finally be able to move home with her parents next month.

Ana-Carolina de Moraes Lobo Bircham, 5, has never been able to play in her own backyard, has never had her own bedroom and has never been tucked into her own bed.

Since she was five months old Ana-Carolina's parents, Peter Bircham and Elane de Moraes Lobo, have spent 20 hours of each day caring for their daughter at the hospital's intensive care unit, often sleeping only every second day.

For years, the couple have been pleading with the health authorities to find a way to let their daughter come home.

Advertisement

"We will finally be able to sit around the dinner table and enjoy a meal together, to watch TV together, to take Ana-Carolina to the beach when we want or even just to the supermarket," de Moraes Lobo told the Herald.

"It's all those little things you take for granted. Honestly, it feels surreal. It's been so so hard these past five years and now we have hope,"

When she was just months old, Ana-Carolina was robbed of her ability to breathe, speak and move due to a neurological disorder called Guillain Barre syndrome.

She has the active and inquiring mind of any school-age child but is 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.

De Moraes Lobo said her daughter had been regaining some movements in the last year.

"She's moving pretty much all her fingers now and she's recovering some of her facial expressions and moving her toes, so it feels like there is hope," de Moraes Lobo told the Herald.

Living in the hospital had put a huge strain on the family.

"Every day people are dying around us, it's a very sad environment to live in. Ana-Carolina gets upset when she can hear or see other children in pain, we have to try hide her from it.

Ana-Carolina and her parents, Peter Bircham and Elane de Moraes Lobo. Photo / Dean Purcell
Ana-Carolina and her parents, Peter Bircham and Elane de Moraes Lobo. Photo / Dean Purcell

"She wakes up to the sound of the hospital helicopter and ambulance sirens and has no windows to let light in, " de Moraes Lobo said.

Though health officials and her parents agreed the best place for Ana-Carolina was at home, it had been almost impossible to make it happen - until now.

National advocacy group CCS Disability Action have stepped up to lend the family a suitable three-bedroom home in Orewa for as long as they need.

Auckland District Health Board have agreed to the arrangement and will provide a care package to support the family in the transition.

Plans are for Ana-Carolina to be discharged from the hospital on May 15, shortly after her sixth birthday.

In the meantime, minor modifications needed to be made to the home to ensure Ana-Carolina's health is maintained.

Her condition means her immunity is weak and the environment she lives in needs to be kept extremely clean to prevent her from getting an infection and falling ill.

The modifications needed included wooden floors to replace the carpet in her bedroom, a heat pump, extra plugs and a fly screen.

Bircham and de Moraes Lobo said the renovations would cost about $15,000. They were also expected to pay rent to CCS Disability Action.

The pair, a former sales and marketing manager and top project manager, stopped work when Ana-Carolina become ill and had been living off their life savings.

They have put their house on the market and taken out multiple loans to
be by Ana-Carolina's bedside .

With no remaining resources to pay the rent and for the minor modifications required they need to raise $50,000 in the next month.

A Givealittle page has been set up to support the family.

A fundraising event has also been planned for this Friday April 12 at Gibbs Farm, Kaipara Harbour which is less than an hour north of Auckland.