IF Disneyland is the happiest place on earth, then being gifted a trip to the landmark from relatives and friends has made the Murrays feel like one of the Hunter's most supported families.
Hillsborough's Kirsty and Russell Murray say they have been "blown away" by the generosity of their loved ones and Mr Murray's former workmates, who have donated frequent flyer points and cash so the couple can take their seriously ill daughter Madison on the trip of a lifetime.
"The support and everyone rallying around has been mindblowing," Mrs Murray said.
"People have come together to do something amazing for Madison while she can still enjoy it.
"Some of these people we don't see that often, but they've been willing to give us so much.
"It just shows she's always in everyone's thoughts."
Mr Murray said the family would not have been able to afford the trip on their own.
"We've never been ones to ask for help and we never expect anything, but we're very grateful," he said.
"We want to thank everyone for the opportunity she's been given."
The Murrays will leave on January 16 and spend three weeks visiting Los Angeles, Disneyland, Big Bear, Yosemite, Las Vegas and New York.
It marks the end of a "rough" year, in which Mrs Murray received a diagnosis of epilepsy and the family's two pet dogs passed away.
"The support our family and friends including Russell's parents, sister and brother in law gave us was unbelievable - it took our breath away," she said. "2020 is going to be a good year."
Madison, 7, has Ataxia Telangiectasia (A-T), a rare and incurable disease.
Charitable foundation BrAshA-T said it's often described as the worst parts of cerebral palsy, muscular dystrophy and cystic fibrosis.
"A-T occurs when a child is born with both copies of the ATM gene disrupted, which prevents his or her cells from producing any ATM protein ... [which] plays a critical role in coordinating how cells detect and respond to certain types of DNA damage."
It said this gives rise to genetic instability and an increased risk of cancer. However children with A-T are sensitive to radiation and unable to undergo traditional treatments.
"A-T affects the cerebellum, which is responsible for muscle control," it said.
"As the cerebellum cells start to die, impaired muscle control results in difficulty with balancing, walking, coordination and fine and gross motor skills.
"This eventually leads to a loss of any movement or activity that requires the use of a muscle.
"Children with A-T are generally confined to a wheelchair between the ages of 8-10 years old and rarely survive beyond their 20s.
"60 to 80 per cent... also suffer from poor immunity, making them highly prone to serious infections."
Year three student Madison swims, plays netball and does physical culture, but gets tired easily.
She has poor balance, hand tremors and her speech has worsened in the past three months. Most children with A-T require a flexible feeding tube by 10 to reduce the risk of food settling in the lungs.
Mrs Murray said the family takes life "day by day".
"Children don't deserve this," Mrs Murray said.
"She's such a happy little girl. She'll play with anyone and gives the best cuddles. 99 per cent of the time she's like any other seven year old.
"We don't know how she will be in 12 months time so while she's physically active I do make her walk to school or run around with friends.
"As long as she can move she should move. Maybe there will be a cure one day."
Mr Murray said Madison was starting to realise the seriousness of her illness.
"When we give her medicine she says 'No-one should have to grow up like this,'" he said.
"It's heartbreaking to hear that from a kid - it's the worst part.
"As she gets older it will be worse, she'll be stuck in a wheelchair.
"We know what's down the track, but we try not to think about it."
He said Madison gives them strength.
"She keeps us going," he said.
"We see a bubbly little girl who loves life and so we try and make it as exciting as we can for her.
"We know it's not always going to be that way."
Madison was born with hip dysplasia and didn't seem steady on her feet when she started walking.
She received a diagnosis of cerebral palsy at 18 months and of A-T at 4.5 years old, three weeks before her parents wedding.
Mrs Murray said only 50 children in Australia and 100,000 in the world have the condition.
"It was an emotional rollercoaster," she said.
"We decided to move back to Newcastle so we could be around family and friends and have access to better medical facilities."
Madison sees a specialist at John Hunter Hospital plus a rehabilitation team once every six months.
She visits an occupational therapist and physiotherapist twice a week, a speech therapist once a fortnight and is part of a trial for a drug that helps with balance and coordination.
She has weekly antibody infusions.
Mrs Murray said her cousin Alan Peddie, who grew up with Mr Murray, contacted her in early December and told her that he, his wife Tracy and children Sammy and Charlotte were going to the USA for four weeks - and had enough Qantas Frequent Flyer [QFF] points to take the Murrays too.
"He said there would be some costs involved but he would also pay for the two day entry to Disneyland if we would seriously consider it," she said.
"He said he would really like to do it while Madi can.
"I was taken aback and cried. I couldn't say much - I didn't know what to say.
"I was in shock - it was very unexpected."
Both Mr Murray and Mr Peddie work for REMA Tip Top, which has the conveyor belt maintenance contract for Fortescue Metals Group Port Hedland, where Mr Murray worked for six years.
Mr Peddie organised a morning tea at the site, which raised $890.
Fortescue's Hedlands operations general manager Katie Day donated $1000.
REMA Tip Top manager Scott McGeachie gave $800.
"I left FMG in August 2017 so for them to still want to do this is unbelievable," Mr Murray said. "It's like one big family."
His brother Cameron and his wife Kristy secretly started a bank account for Madison when she received her diagnosis and have donated the balance of $4000.
The Murrays' friends Mark and Rebecca McCarthy gifted them 95,000 QFF points.
"It's going to be an unforgettable experience," Mrs Murray said.
"I'm glad she can go while she can and is at an age when she will remember it. It will be a once in a lifetime experience."
Donate to support research into a cure at https://brashat.org.au/donate.php
