Marley’s Freo wish
If anyone has ever doubted the impact a simple wish can have on an ill child, please read Marley’s story.
He was born with Vater Syndrome, which is a sporadic association of specific birth defects or abnormalities.
VATER is an acronym used to describe the types of physical problems the child may have.
In Marley’s case, the V is for his fused vertebrae and a syrinx inside his spinal chord.
The A is for an anal anomaly. He was born with an imperforated anus.
The T and E are for his trachea and esophagus (spelt with an E in American spelling), which are connected.
The R for Renal refers to his sole kidney, which is dysplastic. Its function is minimal and he’s been fighting off kidney failure for the past few years now.
As part of his condition, he’s incontinent; he has no sensation, no control of his bowels. Marley needs the help of stomas - artificially created holes in the abdomen so that faeces can still leave the body.
His mother, Kelli-Anne Harding, said the stomas are not just medical instruments to Marley, they are his friends.
“If you ask him he says his insides don’t work so the doctors keep putting little robots inside him to help him to help his bowel work,” she says.
“He has a stoma called Mike, that’s his friend and he’s part of the family.
“With Mike, he has full control of his bowels.”
Marley has also had a brand new bladder put in, which is called a bladder augmentation and is made out of his own bowel muscles.
All this had come to a head for Marley in January. He didn’t want to go on living.
“He said he couldn’t handle it anymore, he just wanted to be like the other children and he couldn’t keep doing it,” Kelli-Anne said.
Enter Starlight, a charity that aims to brighten the lives of seriously ill and hospitalised young children.
Brighten Marley’s life Starlight did.
They’ve granted him a wish, which will see him fly to the Gold Coast when he is better to go to the theme parks.
But that wasn’t Marley’s first wish.
“Originally, he asked to play X-Box with the Fremantle Dockers,” Kelli-Anne said.
“He didn’t want anything else. You can have just about anything you want, but he wanted the Dockers. Everything’s about the Dockers with him.”
Marley’s first wish was granted when Freo’s Starlight ambassadors visited him at Princess Margaret Hospital recently.
"Since the players came up to the hospital to see him, he’s had that on his mind ever since,” Kelli-Anne said
“They brought a smile to his face right at the time he needed it most.”
His mother said the family would be forever grateful to Starlight for making the opportunity possible for Marley.
“Starlight have been simply amazing,” she said.
“They approached us a week after Marley had said he didn’t want to live anymore. Now he’s got his holiday to look forward to and the Fremantle Dockers.”
In fact, Marley is more excited about Saturday’s Starlight Purple Haze game than his holiday to the Gold Coast.
Before going under for his recent operation, he was asked if there was anything he wanted. Marley said ‘just make sure I’m out of hospital before the Purple Haze Game’.
“As soon as he woke up just after the operation, he asked: ‘have I missed the Starlight Media launch, have I missed the game, will I still be able to go to run out’,” Kelli-Anne said.
If you’d asked his doctors, they would have said making it to those events would not have been possible. Marley’s operation, his 39th overall, was two-and-a-half weeks ago and he was told he’d likely be bed-ridden for a month.
But nothing would stop Marley from meeting his idols.
“He had a minor operation in January and was laid out for weeks,” Kelli-Anne said.
“This one was major, very invasive, but he was already up and going.
“His surgeons asked him ‘why?’, and he said, ‘because of Fremantle’.”
Marley is a distant relative of Stephen Hill. He likes the Freo speedster, but he’s also very keen on Hayden Ballantyne, because he stirs everyone up, and Ryan Crowley, who he thinks is a prankster.
After meeting the Starlight ambassadors at PMH and then at Tuesday’s Starlight Laughternoon, he’s changed his view.
“He doesn’t have a single favourite, he loves the whole team,” Kelli-Anne said.
“But after meeting the Starlight Ambassadors, he loves each of them so much now.
“He thinks Chris Mayne is a big kid. Lachie Neale never stops laughing and he wants him to come live with us because that’s what we are like at our house.
“Aaron Sandilands he’s in awe of because he’s just so big, but he’s also so nice to him.
“And he thinks Alex Silvagni is great because he wears pink wigs.
“The fact that they’re real, normal people and can make him smile means he loves them all.”
Marley is just one example of a child who has been given a new view on life because of the work Starlight does.
The smile on Marley’s face now seems permanently etched.
“People say to us that the whole family is so positive. It’s all him,” Kelli-Anne said.
“It’s so heartbreaking as a mum to hear your child say ‘I just want to die’.
“To see him now in his element, smiling and meeting his idols, is just overwhelming.”