Over the past two years, parents Nyree and Grant Saxby, of Woonona, have been busy campaigning to save the life of their nine-year-old daughter, Chloe, who was diagnosed with the extremely rare Vanishing White Matter Disease five years ago.

To help find a cure for the disease – which there are only seven cases of in Australia – the family launched the ‘Saving Chloe Saxby’ campaign in 2016.

Almost two years later and with more than $1 million raised, Chloe and her family were due for a holiday.

“We need to raise $2.6 million to try and save Chloe’s life, so all of our funds and our time are spent on that,” Mrs Saxby said.

“Every weekend we fundraise – we’re exhausted.

“This disease has just taken up the whole of the past five years, our finances and our time.

“Pretty much it’s our life now, so it’s been really hard.”

An unexpected vacancy at Fiona Lodge Ronald McDonald Family Retreat in Rosedale was the perfect Christmas surprise for Chloe and her sister, Madeleine, 13.

“When we were contacted just before Christmas to say there had been a cancellation, the girls were just so over the moon; they were so excited,” she said.

“For us to be able to spend some time together as a family, it’s priceless.

“It’s good just to get away from the house, because when I’m home, I’m always doing something for the campaign.”

Thanks to the generosity of local businesses, the Saxbys have been out exploring Batemans Bay’s attractions, including mini golf, a giraffe feeding session at Mogo Zoo and an eagerly-awaited visit to Birdland Animal Park.

Despite the Saxbys doing all they can to protect Chloe, the disease has taken a tragic toll.

“It’s a degenerative, terminal disease,” Mrs Saxby said.

“Chloe was perfectly healthy till she was three, then she came down with a vomiting virus and within a week, she couldn’t stand up or walk on her own.

“A minor bump to the head or cold can cause her to deteriorate further.

“Over the winter period, we kept her free of sickness, but her speech is deteriorating and she’s slumping more in her chair.

“We’ve tried so hard to protect her, but she’s still deteriorated.

“That makes me furious.”

Mrs Saxby said it was simple for people to help.

“Please throw your spare change into the Ronald McDonald House box, because that enables families like us to have a week away,” she said.

To help Chloe and her family, visit www.savingchloesaxby.com​