Grace does not eat. She never has. She will mime eating, but the food will go to one of her parents, Pip or Gareth, to eat instead.
Recently, in a major step forward, Grace has begun playing with her tea set, spooning small amounts of water from a cup to her mouth.
"Even just a wee bit of moisture is good. She likes to pretend she can do it," Mrs Hughes said.
They were, however, doing their best not to react, as in the past that had sometimes deterred Grace from licking or drinking.
There was excitement when she took a sip from a drink bottle and started licking an ice cream, but Grace no longer did either.
She still licked at tomato sauce. Her parents believed it was because Grace wanted to be like other children. She lined up at a sausage sizzle, not for the sausage but for a piece of bread with tomato sauce on it.
"It's so weird, even to us. She gets so hungry. You can hear her stomach grumbling, but she sees food as evil, as what chokes her."
Grace's behaviour goes back to when she was born and began to suffer from severe reflux, a condition from which her brother Oliver (7) also suffered, although not as badly, Mrs Hughes said.
Grace refused to feed, constantly screamed and vomited up to 17 times a day.
The family tried various types of formula and mixes of formula. They fed her by finger, struggling for hours to get 10ml into her, only for her to throw it all up, Mrs Hughes said.
"It was a nightmare. We were constantly changing clothes and bedding."
When Grace started to lose weight, she was admitted to hospital and was later fitted with a nasal gastric tube, which she continually pulled out.
Grace, who also has undiagnosed developmental delay and is small for her age, then had a medical procedure to prevent her from vomiting and had a gastric tube put directly in her stomach through which she is fed a nutritional milk formula.
"The constant throwing up stopped. We didn't know ourselves," Mr Hughes said.
Grace also spent a week in Starship Hospital in Auckland undergoing more tests, which revealed nothing physical was keeping her from eating.
The situation had been frustrating for the family and Mrs Hughes said they were desperate for a "label" for Grace's condition, or to know if anyone else had similar problems.
"We've got nobody to phone [who understands]. It would make it easier."
It was that search which led to the family's appearance on the 20/20 television programme about children who did not eat and the realisation it was all right to ask for help to get the family to an Austrian teaching hospital, which specialises in such cases.
Mrs Hughes had been in touch with the hospital, which indicated staff were confident Grace could be helped by the treatment programme. The trip could cost about $50,000.
Friends rallied and the St Clair Community Kindergarten, which Grace attended, was planning a quiz night on September 9 to raise funds for the family.
"A big part of me does not want to make a big fuss, but it's not about me - it is about Grace."
The Hughes had also set up a trust fund account, the Amazing Grace Medical Fund, with the National Bank, if people wished to make donations.
