Anguish over Matisse's struggles

Matisse Reid likes dolls. She likes to dance, sing, play the guitar and sew. She likes to cook and one day wants to open her own restaurant.
Matisse Reid is like other 10-year-old girls, except she has never been able to eat. If she does, even just a teaspoon-sized morsel, she doubles over in pain and her parents have to syringe the undigested food out of her stomach.
Matisse was born with rare chronic disease and relies on formula fed through an IV line for her nutritional needs. But since her double organ transplant at the Children's Hospital of Pittsburgh in December she's been able to nibble a bit more at food.
Matisse was discharged from hospital two weeks ago. She's still suffering the after-effects of the operation, but mum Jodee says she's looking great and, physically at least, is making tiny improvements.
She's been well enough this week for Jodee to start making arrangements for home schooling and signing her up to a baseball team for next season.
But it's still early days. Matisse eats "next to nothing, some days nothing at all". She goes to hospital three or four times a week and has a long list of daily medication, tests and monitoring.
More worryingly, Matisse isn't yet back to her normal, sociable self. Her medication is "playing havoc". She's quiet and uninterested in her usual hobbies.
"We were prepared for the medical stuff," says Jodee "but the emotional things we weren't prepared for. It's just floored us."
The transplant was not a cure-all. Matisse suffered a host of post-operative problems and twice her body rejected the new organs. She still suffers nausea, headaches, problems with her IV line and severe immune suppression. Almost every two hours between 6am and midnight Jodee and Wayne prepare and administer her medication, make formula, take her temperature and blood pressure, hook-up fluids and record levels of waste.
"It's just constant. If you leave the house you've got to think about what time it is and what to take ... we've been doing this for so long. Matisse has been sick for 10 years. [Post-transplant] is really just a different set of medications, a different set of rules."
Jodee can't make long-term plans for Matisse. She has no idea when she'll be well enough to return to school, or for the family to return home for good. Matisse may need further transplants.
"It's still really early days. We've seen transplant kids have a really good first year, and a really good second year and then just bottom out. We don't know where the future lies ... that's the big thing and this [transplant] isn't a cure," she said.
The transplant was a long time coming. The family packed up their Napier home and left for Pittsburgh in the United States four years ago. They were on the waiting list for organs and went through eight false alarms. Each time enduring the hope, anxiety and then shattering disbelief when each time the operation was cancelled.
But staying in New Zealand wasn't an option. Dr Helen Adams from Auckland's Starship Hospital says the severity of Matisse's condition is extremely rare, perhaps affecting one or two children in a million. There are medical experts in New Zealand who were familiar with chronic intestinal pseudo obstruction, but no hospital here or in Australia performed the necessary organ transplants.
Jodee says: "Her [New Zealand] doctors were great but it was hard. They hadn't looked after kids like her before. We had done our research and felt that Pittsburgh was the best. They're pioneers in small bowel transplants and have good facilities."
It's not an ideal set-up. They're far from family and friends. Matisse can't leave the country because she's got to be within six hours of a hospital in case something goes wrong. Jodee and Wayne haven't been able to obtain working visas and for the past four years have had to renew their tourist visas every six months. Without the ability to work, money is tight and they're extremely grateful for the community support in Hawke's Bay and the US that has enabled them to keep afloat.
"We've got a lot of wonderful people in our lives. We've been really really lucky.
"We want to be standing on our own two feet and are doing everything we can to find a loophole [in the immigration laws to be able to work]. We can't rely on public support forever."
The family has settled into their new lives in Pittsburgh. Eldest daughter Rachel, 19, is studying at Duquesne University. Kalani, 12, is an ice hockey fan and Fraanz, 6, has settled into his local school.
The meds, the hospital visits, the sickness is all part of normal life for the Reid family.
But forget for a moment the sickness, and Matisse is still a unique little girl.
Jodee said: "She's just a cool kid. The kids adore her, the teachers adore her. She's very adult in terms of her conversation, but a little girl at heart.
"She's just fun and we're hoping to get the Matisse back that we know."