A rare bowel disorder means four-year-old Matisse Reid has never eaten a square meal and her life depends on her being fed intravenously.
But the intravenous intake of food - the thing that keeps her alive - is slowly threatening her life.
Matisse needs a bowel transplant - a rare operation which is not performed in New Zealand. And to get that transplant the family - mum, dad, and three siblings - have to move to the United States and wait which in itself could take a year.
The family
is awaiting an assessment from an American hospital before deciding
when to relocate to the US for the transplant operation. They're
hoping to do that by the end of next year.
Matisse is like most little girls but her needs bind her
family.
The nightly family routine is much like any kiwi family. Matisse gets served a normal meal.
"We imagined we wouldn't be able to eat in front of her," says mother Jodee.
"We wouldn't have a Christmas dinner but once we got organised, we decided she is going to do all those things and she is going to be part of it.
"She is going to grow up with food. It's a social event, you can't avoid it and we are going to make it part of her life as well."
Her father Wayne says if Matisse is ever invited to anything she becomes sick and can't go.
"She never ever mentions it, she just takes it in her stride and deals with what's going on," says Wayne.
Food is part of her life, but Matisse can't actually eat any of it.
Every night mum prepares her real meal, in the laundry - a mini medical clinic.
It's two litres of essential fluids Matisse must take to live - her small bowel doesn't work which means it doesn't absorb vital nutrients or process the body's waste.
"This is going into her bloodstream - if anything goes wrong I am potentially causing her harm, it's very scary," says Jodee.
The family rarely go on holiday.
"We can go away, but it is really difficult, it takes a lot of planning," says Jodee.
"Matisse can't go anywhere on her own without Wayne or I because this is quite complicated and if anything happens overnight someone has to be there to look after her."
"She's never had a sleep over and until she comes off this probably never will," says Jodee.
Bedtime is when Matisse gets hooked up for her nightly feed - 13 hours attached to her intravenous line.
First her IV lines are flushed clean to prevent bacteria building and other medication is injected into her stomach.
"She's on one medication to preserve her liver, because TPN (total parental nutrition) damages the liver, and the other is for her abdominal pain which she suffers," says Jodee.
Now Jodee wants to give Matisse the chance to sleep normally.
"Once we have got funding organised we go and sit and wait for an organ to become available and then once an organ comes up, have the transplant and hope and pray it's successful for Matisse, and if it's successful she will live a normal life and if it's not successful, we may lose her."
They have little choice - the very thing that is saving her life now is also threatening it.
"Unfortunately for Matisse, she has had a lot of lines, IV lines which means long term she runs out of IV access, her liver is starting to show signs the TPN...her night feeds, are taking their toll on her liver, so if her liver goes we are in deep deep trouble," Jodee says.
"She has horrendous chronic pain which sometimes the best drugs and the best hospital can't get on top of, she can scream for hours, for days, for weeks in pain and there is nothing anyone can do," she says.
Morning time and the routine begins again.
Next year the Reids plan to sell up and wait in America for a suitable donor - it could take a year.
That's why Jodee's building up her own mother and baby skin care business - in fact Babybaby's just won Telecom's most inspirational home business award.
"This is extremely important, because when we go to America for the transplant, we need an income while we are not here so in terms of business it is extremely important that it succeeds for the family," Jodee says.
But it's all about a struggle for normality so many of us take for granted.
"We are just hopeful that Matisse does have a future, we are optimistic that one day she won't need the IV feeding, that one day she will eat, or her body will allow her to eat," says Jodee.
"We have always been optimistic, hopefully technology just moves forward, or small bowel transplant will work for Matisse and be the answer to our prayers."
