|"Fraanz was born in to the lifestyle, so he doesn't know any different," Jodee Reid says. |
"Rachel has made the best of a bad situation and knows things can be cancelled at the last minute - that there are no guarantees."
As much as she loves Matisse, and works tirelessly to give her family as normal a life a possible, the price her other children have paid grieves Jodee.
But there is no reprieve. When Jodee isn't tending to Matisse's unrelenting medical needs, she is cooking, cleaning and running a business.
Meanwhile husband Wayne is hard at work too in the flooring industry, never knowing from one minute to the next when he will have to down tools and rush home to help Jodee handle another medical emergency.
At night, the three children toss restlessly as Jodee tends to her pain-wracked younger daughter.
As the little girl's screams of agony ring through the house, the three wake and listen anxiously.
To fund a $US1 million liver and bowel transplant for Matisse is a huge ask for any community, but it would transform not just one, but six lives. Suddenly, the cost takes on a whole new perspective.
Kalani, who was two when his sister was born, was the most profoundly affected of the Reid's children.
In the final weeks of Jodee's pregnancy, he had been over the moon at the prospect of a new baby sister.
But within 24 hours of her birth, on Christmas Day, 2000, Matisse and her mother were rushed to Hastings Hospital, then on to Waikato Hospital's neonatal intensive care unit. Kalani, too young to grasp what was happening, was left with his grandparents, bewildered and bereft.
"Overnight, his new baby sister and his mother left him for three months," Jodee remembers.
When the pair were finally discharged home to Napier, Kalani had just two weeks with them before they, his father and Rachel disappeared once more - this time to Auckland's Starship Children's Hospital, where they remained for five long months.
"Previously, he had enjoyed day care," Jodee says.
"But after that, he wouldn't leave me, he'd scream and cry." Kalani had developed separation anxiety. His first year at school was no better.
"He spent it kicking and screaming and he wouldn't stay at school - we'd both end up in tears." It has taken a full year for the Reid children to come to terms with the family's planned move to the US city of Pittsburgh, where it is hoped Matisse will finally get her liver and small intestine transplant. Hopefully, it will be the final - and most rewarding - upheaval they have to face.