Pain beyond her years

It's 8am in suburban Napier and tubes and pipes hang off 5-year-old Matisse's stomach as if she too is a piece of machinery.

After 13 hours in bed she is still hooked up to a noisy, vibrating intravenous pump that sounds like a didgeridoo and keeps her brother Kalani awake at night.

Standing beside her bottom bunk in her knickers and a singlet, her head of thick brown curls shakes with each shiver. In her left hand is a clear bag filled with yellowy liquid, which is draining from a tube in her distended stomach. Below that is a beige bag, attached directly to her upper bowel. She is in agony, is nauseous and has already had a bout of dry-retching today. Dry because there is nothing in Matisse's stomach to throw up.

This is a normal morning for the little schoolgirl who has never eaten. And now Matisse Reid is literally dying for her first meal.

Ask Matisse about her pain, and she gives a coy grin, then changes the subject to show off her latest toys. Talk to her about the planned trip to the US to get her life-saving small bowel transplant, and all she can think about is Barney the purple dinosaur.

She is too young to imagine another life or to know there's anything to complain about.

Instead she raves on and on about Barney. She is a girl obsessed. "He is my favourite," she beams.

What kind of things will she be able to do when she has a new tummy? "I'll be able to see Barney," she says.

Won't she be able to eat food like everyone else?

"Yeah," she answers. And she will be able to go swimming five times a week. "But the most exciting thing in America is seeing Barney."

This is what has captured the hearts of the people of Hawke's Bay. They have rallied around the little girl to raise the impossible amount of money needed for her operation. It's been a mammoth effort.

Her school has held "purple days" in honour of Matisse's favourite colour. The local paper runs a fundraising campaign, and an art auction, with work donated from leading artists, is planned for next week.

So far, nearly US$70,000 has been raised - almost US$1 for every citizen. But it's a drop in a bottomless bucket compared to the US$2 million needed for Matisse's surgery alone. The Ministry of Health could provide the money needed to save her life, but has been mulling over the decision for months.

Meanwhile, the liquid food pumped into Matisse every night is destroying her liver, and doctors have told her mother Jodee Reid that she is literally running out of veins needed for the drip.

What Matisse needs is a small bowel transplant - a rare procedure never performed in Australasia - which the family must travel to Pittsburgh for.

It's risky, her mum says.

"I hope that I never live to regret it. The fact is we're either going to save her life or prematurely end it. But if we don't do it, we're not going to have her forever anyway.

"When you see her in pain... she can't live like that; she can't live the rest of her life like that," she says.

Matisse was born on Christmas day 2000 in a birthpool in her parents' Napier home. She was a desperately wanted sister for 3-year-old Kalani and 9-year-old Rachel.

"It was a normal birth, we had no reason to suspect anything was wrong," Jodee remembers. "Then almost instantly after being born she was vomiting bile and she never passed meconium (a newborn's first faeces), so come Boxing Day night we took her to the hospital and we didn't come home for eight months."

Matisse was flown to Waikato Hospital, where the family spent several months, then she was in Auckland's Starship hospital for five months. Doctors were stumped.

Three major surgeries later, Matisse was finally diagnosed with a rare bowel disorder that means she can never eat or process food.

"They said if she did survive they didn't know what was in store," Jodee says. "So in those early days, we didn't know how long we had her for.

"It was incomprehensible."

The Reids were devastated. So much of their family life was going to have to change.

"Soon after she was diagnosed, we took the other two kids to McDonald's and we thought, 'we can't do this any more as a family; we can't do these normal things'. We thought 'we will have to eat in secret'.

"How can we sit and eat? Christmas, birthdays - they all revolve around food when you think about it. We thought 'maybe we can't do that anymore'," Jodee recalls.

When they first brought their daughter home, Wayne, Matisse's father, refused to eat in front of her.

"Then I said 'this is ridiculous, we have to live our lives, we have two other kids; let's involve her, let's involve her in food' so when the time comes, because we always thought she would come right on her own, she wouldn't have an aversion to food. That's really helped us maintain a normal life."

So Matisse takes her lunchbox and lunch to school like the rest of the kids. And at mealtimes, she comes to the table with her family. The difference is she doesn't eat.

"She picks at it and might put a little in her mouth and play around. But she's first at the table and the last down."

And she is the most grateful. "'Mum, this is delicious', she'll say, 'this is my favourite', then she says 'I've had enough now' and we put it in the fridge and save it for later."

It's 9am and clearly Matisse is not well enough to go to school. She has started to have silent moments, when her cheeky bossing and demanding wane and she slumps to the floor or to her mother's lap and silently starts to dry-wretch.

Jodee goes off to get her a towel, which Matisse holds under her chin and waits for the feeling to pass.

Franz, her 2-year-old brother, pokes his nose in to try to cheer her up.

It was a big decision to have another baby after Matisse, but the Reids had always wanted four children and now, says Jodee, Franz has made the family complete.

"There have been days and weeks when Matisse has been so sick and he is the only person who can make her smile."

Matisse perks up. "Mum, sometimes Franz tries to make me better," she says as Jodee picks her up for a hug.

Love saturates this house, and Kalani also dotes on his little sister.

"He was so excited about her coming," Jodee says. "He was convinced he was getting a sister and he loved her before she was born."

Kalani tells me he is looking forward to Matisse getting better so the family can "go swimming and to McDonald's and stuff more often, and so that Matisse can eat".

At this, Matisse punches him in the arm: "What about when I see Barney? That's the best thing."

I ask Matisse if I can talk to her about when she feels yucky. Initially, she was excited about the idea of being interviewed but this time she puts her head down and says "no".

Does she feel yucky every morning? "No yes no yes no."

She goes and sits on her mother's lap in the corner.

What happens in the morning? "I spew." Does that upset you or do you get used to it? "It upsets me."

And what do you do when you get upset? "I cry."

And what does Mum do? "She comes down and puts my bag on and gives me a drink."

Does that make you feel better? "Sometimes," she answers as she buries her head in her mother's shoulder.

Jodee: "It takes a while, doesn't it?"

Matisse: "Yes." Then she looks up and smiles. "Hey, I've got heaps of toys! Do you want to see?"

The family first heard about the small bowel transplant option when Matisse was still a baby. Back then it was too experimental and the risks she would die were too great.

Now, the risk is significantly reduced, and the Reids have decided it is worth the gamble for Matisse's future.

Her pain is unexplained and unbearable, says Jodee.

When it's bad, she doesn't sleep for days and needs to go to hospital for sedation. Adult doses of opiates have no effect on her.

"When she's well, it's hard to think that we're going to put her through all that, it's hard to think we're going to put her through the surgery and all that, but when she's unwell it's an easy decision to make. You realise she can't go on like this.

"And she will get to an age - and I don't think it will be far off - where she will end her own life because of the pain. I see children who've had medical conditions, who at a very early age work out how to end it for themselves, and that's a fear of mine; that she will work out she doesn't have to live like this and she doesn't have to live.

"And that overrides the fear of the surgery not turning out for her."

While the health ministry mulls over whether to fund Matisse's surgery, Jodee grows increasingly uneasy.

Most families would not be able to manage a child with Matisse's condition on their own.

Jodee has had to learn to be Matisse's main medical caregiver; managing her intravenous feeding, learning to become completely sterile to deal with the Hickman line directly into her veins, syringing out her stomach, and dealing with her colostomy bag.

Today, she will take blood samples directly from the Hickman line to the hospital. Matisse has been up at nights vomiting - a sign she has some sort of infection.

Jodee's whole life is dominated by her youngest daughter's illness.

Though Matisse has spent about half her life in hospital, other children with less dedicated families would have to live there permanently.

Even so, if Matisse lives another 10 years, her care would cost the health ministry more than it would spend on her operation. So it angers Jodee that the ministry would consider the operation not a good use of money.

She holds Matisse tight against her chest as she talks about this.

"We've been in limbo for more than a year. We're not bludgers; we could have decided it was too hard to work with Matisse being sick, because it is really hard. Wayne has taken a lot of time off work when Matisse is sick. We could have just gone on the dole but we haven't.

"We know we are good people and we are doing our best for her so I just think they should pay for the operation.

"I could get really political and say 'well, in this country you're allowed to kill your children, like the Kahuis did, and get away with it' and I dread how much that investigation is costing. Maybe that could have paid for Matisse's surgery.

"We love her and we want to keep her and that's all there should be to it.

"[The government] send millions of dollars overseas. They've spent US$140 million over budget on a women's prison. Those women are allowed to keep their babies until their babies are two.

"Why can't I keep my baby?"

At that, Matisse looks up to her mother and cocks her eyebrow. "What baby?"

"You," her mother smiles.

"I'm not a baby!"

"Well, you're my baby."

Go to www.chance2eat.org.nz for information about the trust set up in support of Matisse Reid.