School stage 2 of custard coup

Grace Hughes has a mouthful of her new favourite food, vanilla custard - the first time she has...
Grace Hughes has a mouthful of her new favourite food, vanilla custard - the first time she has fed herself. Photo by Peter McIntosh.
Grace Hughes heads to Balaclava School for the first time this week but instead of a feeding tube in her lunch box there will be her new favourite food - custard.

The 5-year-old, who had never eaten without the aid of a gastric tube, kicked, screamed and fought, but finally ate - stewed apple - after more than three weeks of treatment at a specialist hospital in Graz, Austria.

The trip had been made possible by the generosity of the Dunedin public, who contributed the necessary $50,000 at various fundraising events last year.

Grace's mother, Pip Hughes, admits the trip was not easy, especially as at the end of the three-week programme of physical, speech and developmental therapy, Grace was still not eating, had lost more than 2kg and was exhausted.

"By that stage, she had not eaten for 10 days.

"She still fought like anything, kicking, screaming and punching."

From the start of the programme, Grace's intake through her gastric tube was restricted so she could learn what hunger was.

"She was like a junkie coming off the tube; she'd go through all the cupboards and the fridge to look for it."

The family stayed another two weeks after the initial three-week programme, and in that time the clinic implemented a more intense one-on-one programme for Grace, reinforcing that food was as important as walking or breathing.

"Grace had reached the point her body was screaming out for food, but her mind had been fighting it for five years.

"She is so strong-minded."

It took its toll on the family.

Her brother Oliver (7) was getting so worried about Grace he urged his parents to feed her in case she died, while Mrs Hughes dissolved into tears when Grace went into treatment alone.

"It was awful, but they explained they weren't doing anything awful; she just couldn't manipulate them like she did us."

After she took the first spoonful of stewed apple, Grace discovered custard and was now addicted to it, Mrs Hughes said.

She also had a fondness for tomato sauce.

"Once she started eating custard, she'd go to bed at night with her bowl and spoon ready for breakfast."

Her gastric tube was removed and the family followed clinic tradition by throwing it into a nearby river.

The family now planned to introduce more foods to Grace, and she was already putting food into her mouth to get a taste and to feel the texture.

 

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