Just days before their baby's first Christmas, parents Lynne and Edward received devastating news.
Their three-week-old baby boy Will was diagnosed with Cystic Fibrosis.
"We were overwhelmed with sadness and worried for Will's future," mum Lynne said.
Cystic Fibrosis (CF) is a progressive disease that affects the lungs and digestive system. It requires ongoing hospital treatment, therapies and medication.
Will was classified 'failure to thrive' and spent weeks in the Women's and Children's Hospital in Adelaide.
Lynne says that time was filled with fear and uncertainty as they tried to come to terms with Will’s diagnosis and the new routine of caring for a child with CF.
Sadly, not long after coming home, Will was back in hospital with pneumonia. He was fitted with a nasogastric tube for six months as he wasn't feeding well enough.
Now age 11, Will has regular hospital appointments and twice daily physiotherapy sessions. Living with CF means there are no "carefree" days out.
Lynne says despite everything Will has to deal with, he’s an active, social kid who likes to dance and sing and is always up for a chat!
"I think it's made him more resilient emotionally. He's never known anything different, and we've always endeavoured to put a positive spin on things," she said.
While hospital is part of Will's life, so is Starlight, helping to bring him the fun and happiness he needs.
Will and his older brother Henry, 13 both love visiting the Starlight Express Room to play games together and hang out with Captain Starlight. And they never miss the daily quiz!
"Whether he's in hospital for a day or for a longer admission, Will always goes to the Starlight Express Room. Starlight is the reason that Will not only isn't afraid of hospital but actually enjoys going," his mum says.
Knowing Captain Starlight is there to entertain the boys, helps Lynne and Edward feel less anxious about Will being in hospital.
"Sick kids already miss out by having to be in hospital. Starlight gives them something special to look forward to and be a part of and helps take away their fear."
Will previously had something extra special to look forward to when he found out the exciting news that he was being granted a Starlight Wish.
He has always loved animals, especially white tigers and snow leopards. So for his wish, Will chose a family holiday to visit the theme parks in Queensland to pat a dolphin and see the tigers.
Will had never been on a plane before, so couldn't wait to get his first-ever boarding pass! His mum said, "Family holidays are rare for us, so Will's wish gave us something fun to look forward to."
Will loved every minute of his trip of a lifetime. He got to see all his favourite animals and being together as a family created new happy memories to look back on.
"Starlight is an invaluable part of a child’s life living with a chronic illness. No one can ever really understand how much ongoing care and treatment is needed. To have some of that relieved with the humour, fun and joy that Starlight brings is vital for the child and the family's wellbeing," Lynn said.
