REBECCA Mizzi gazes into her daughter’s eyes and feels a surge of love so powerful it overwhelms her.
Born in January with the rare Prader-Willi Syndrome, little Ava has forever changed the lives of Rebecca and husband Vince, forcing the Gunnedah couple onto a carousel of doctors’ appointments and hospital visits.
The genetic condition means Ava will soon develop a growing obsession with food so strong she could well gorge herself to death.
Put simply, she will never feel full after eating again, a voracious hunger her constant companion in life.
It’s one of the bizarre by-products of a syndrome which also causes facial abnormalities, low muscle tone, learning difficulties and a raft of other problems.
But despite their torrid year, sitting in Ronald McDonald House Tamworth yesterday, the family – which includes Mia, 2, and Noah, 4 – are celebrating a rare slice of good news.
“We’ve just been told we can go home for Christmas,” Rebecca says.
“It means so much, especially to the other two kids.
“They’ve been dragged from pillar to post all year and as a parent, you do feel guilty.
“They’re sick of doctor’s appointments, sick of seeing an ambulance pull up and mum disappear.
“We just want to have a normal Christmas - go and see the Christmas lights, spend time with family.”
When asked how she was coping, Rebecca looks up, her eyes suddenly pooling with tears.
“People always say to me they don’t know how we cope with it,” she says.
“But she’s our baby and we’ll always fight to give her the best.
“To us, this is life now. And life goes on.”
“Life now” has involved more than 85 medical appointments since January - that’s almost two a week - and regular trips to John Hunter Hospital in Newcastle.
And the prognosis remains grim.
Between the ages of two and five, Ava will develop a constant feeling of starvation.
She will become increasingly obsessed with food - she’ll draw it, she’ll dream about it, she’ll forage in the bush just to find it.
Her family will have to keep food locked up and Ava strictly monitored, or risk her eating until her stomach ruptures.
“She will struggle to live independently because her desire for food will constantly get the better of her,” Rebecca says.
“We’ve had to come to terms with the fact that we’ll never have a typical life.”
Rebecca thanked the staff at Ronald McDonald House Tamworth for their “amazing support” during the family’s stay.
Christmas Day for the Mizzis will involve a spirited session of present opening, followed by a trip to Quirindi to visit the grandparents.