Doting dad Pat Crowley has a troubled relationship with the number 17.
That was the age both his boys were at when they were dealt life-changing blows that would ultimately lead his Northern Beaches family to a heart-rending decision … and Pat’s belief that it was a number the close-knit Crowley clan was “cursed with”.
He said he was shopping at Coles on September 10 while wife Nicky was baking muffins at their home when he received a phone call from youngest son Fletcher.
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The 17-year-old was calling from the base of a BMX dirt jump at Red Hill Reserve on the Central Coast, after what Fletcher called a “solid stack” attempting double backflips with his friends.
Pat was familiar with calls of this nature from his sons, both of whom have a passion for “pretty hardcore” sports, but he told 7NEWS.com.au he noticed “something was up” in Fletcher’s voice.
“I’ve had that call before, with ACLs and other injuries, but this was weird,” Pat said.
Fletcher didn’t tell his dad on the phone, but he couldn’t feel his legs. Later at Royal North Shore Hospital, doctors would diagnose him as a paraplegic.
“I have no movement from the waist down and no one can say whether it will come back,” Fletcher wrote on social media.
“It sucks to say the least, but life gives you lemons, and I’m just taking one extra lemon this time.”
Fletcher’s devastating diagnosis came just three years after older brother Levi, now 20, was also dealt life-changing medical news: He has an exceptionally rare and lifelong form of cancer called Von Hippel-Lindau syndrome (VHL).
“Levi was diagnosed at 17, and Fletcher had his accident at 17 — so, 17, we’re cursed with it,” Pat said.
“(Levi) came home from school (in 2021) and said, ‘I’ve got a black dot in my eye, Dad.’
“The next day he texted and said, ‘I’ve still got this black eye, do you reckon you could get me an eye test?’
OPSM advised they see a retina specialist “really, really quickly”, and Pat said: “They looked at his eye and said at that moment, yep it’s a thing called VHL. It’s a rare genetic cancer.
“It just blew our minds straight away.
“He’s now blind in his left eye because we found out a big tumour had ruptured in his eye — that’s how we discovered it.”
VHL is characterised by the consistent growth of tumours arising in multiple organs, many of which are benign but which also require regular checks and complicated surgeries to remove.
The condition affects about 1 in 36,000 people, according to Sydney Cancer Genetics. “There’s something like 220 people in NSW with it,” Pat said.
“His body thinks it has more oxygen in his system to be pumped around, so it produces more red blood cells, and those red blood cells get to the lungs and say, ‘Hey, I’m here to carry the oxygen’, but there isn’t any oxygen there.
“(The blood cells) have to go somewhere, so they then form these tumours in his central nervous system, which is basically his ears, his eyes, his brain, his spine, and his renal system, so his kidneys, his pancreas, his testes and his liver.”
Levi has had 13 surgeries in the past three years since his diagnosis, including the removal of a lime-sized tumour from his brain.
“We go through an annual scan every June to see where the tumours have grown, have developed, or have stayed still. He has a tumour on his kidney that we need to look at on November 6, which will more than likely need to come out,” Pat said.
“It’s a lifetime of monitoring and maintaining the tumours in his body and, really, leaving them there until they become a problem and then taking them out and dealing with the complications of surgeries.”
For Fletcher, who broke two ribs and fractured his T8 and T9 vertebrae, the hospital has already become a familiar sight, and the next five months ahead will be filled with a rigorous rehabilitation regimen.
An operation fused his fractured vertebrae together with plates, rods and screws from the T6 to T11 vertebrae, and he spent a week in ICU before moving to a wheelchair, and then to the spinal rehabilitation ward where he will remain for the next couple of weeks.
Fletcher will soon be transferred to Royal Ryde Rehabilitation Hospital where he will complete several more months of rehabilitation, which Pat said his son has been handling “incredibly” while employing the sense of humour he’s well known for.
“He’s blowing our minds with how he’s processing it,” Pat said.
A costly choice for the Crowleys
At a time in their lives when other parents are facing smaller hands-on workloads in dealing with their kids, both Pat and Nicky have instead stopped working to support their youngest son — a difficult choice because it comes at a cost.
But Pat said: “There’s no way we couldn’t.”
“What do you weigh up? Going to work five days a week when you can’t actually work, or hang out with my boy in hospital? That’s what we’ve chosen to do.
“Because mental health is the thing you’ve got to hold up through this whole thing.
“Sure, it’s hard, don’t get me wrong. But we’ll get through it.”
Their workplaces have been supportive, but Pat said mounting bills became apparent “as soon as it started”.
“You’re like, holy Jesus, look what we’ve got to deal with, now.”
Pat’s sister Aine Mcgrath started a GoFundMe to help support the family with ongoing treatment for both brothers, alongside mounting bills for medical costs, mortgage repayments, travel and home modifications for Fletcher’s return home.
“To have two kids facing such immense challenges requires a special kind of fortitude,” she said.
“The words ‘sh*t show’ have been mentioned a few times by the Crowleys, and you can’t help but think that’s exactly how it must feel for this beautiful family.
“Yet, this family’s strength and resilience are nothing short of inspiring. Fletcher’s accident has added a new layer of complexity, with the need for significant home modifications, along with ongoing medical support.”
The Crowleys would also like to put aside funds for a time when medical advancements might allow new opportunities for the boys.
“The boys will be able to access what, I believe, will happen with science and medicine, which is … trials and tests in the coming decades that will hopefully provide opportunity for recovery,” Pat said.
“We’re all still here, we’ll have a good life together. We’re lucky … you gotta focus on that stuff.
“You’ve always got to hang on to a little bit of hope. You’ve got to.”
Those wishing to support the Crowley family can find out more by visiting the GoFundMe.
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