Three years ago, the Crowley Family was living a happy life in Manly Vale with no idea of what fate had in store. Pat and Nicky Crowley have two sons, Levi and Fletcher, at that time aged 17 and 14 respectively. Levi loves skateboarding and snowboarding and Fletcher is into anything on two wheels, primarily Dirt Jumping (a sort of cross between BMX and Mountain Biking).
Life has changed dramatically for the family since, with their eldest diagnosed with a rare cancer and, just a fortnight ago, their youngest suffering from a major spinal injury.
In 2020 when Levi was diagnosed with a rare form of genetic cancer called Von Hippel-Lindau syndrome (or VHL). Only some 200 people in Australia and just 66 or so in New South Wales have the disease and there’s currently no cure. VHL is caused by a mutation in a gene involved in cell growth. It’s associated with generally benign but occasionally cancerous blood vessel tumors arising in multiple organs, mainly to do with the central nervous system and including the brain, spinal cord and retina. The kidneys and pancreas are also targets.
VHL affects around 1 in 36,000 people. About 10% of those, as in Levi’s case, have no family history of the condition.
Levi was first diagnosed when he developed a retinal tumor. At just 20, he has now lost all sight in that eye. He’s also currently carrying some 12 other tumors within his body, including a sizeable one on his brain. Where possible, these tumors are removed surgically. In the three years since being diagnosed, Levi has undergone no less than 13 operations.
He’s due to have another scan in November to detect any further tumors and then scans once every year, ongoing. It’s a constant cycle of surveillance, surgery and recovery, which places a tremendous psychological and physical burden on patients. Yet after dealing with VHL for three years, Levi remains upbeat and plans to live as normal a life as possible… but the fear he faces daily is losing sight in his remaining good eye and going completely blind.
Then, on Sunday September 10, the family was dealt another blow when Fletcher, now aged 17, was practicing for an upcoming Dirt Jump competition. Normally he would have been doing so at the Big Air Indoor Bike Park in Brookvale and landing on Air Bags… but that complex is temporarily closed due to damage caused by a recent fire. So Fletcher and his mates were instead practicing on the Mountain Biking trails at Red Hill Reserve, above Oxford Falls.
Fletcher was involved in a life-altering accident that left him with a severe spinal cord injury. He has a Grade B impairment of the T9 Vertebra, meaning he has sensory function, but no motor function below his abdomen.
As his dad Pat put it:
“The messages going up are working, but not those going back down.” He does have complete mobility of his trunk above that level.
Fletcher is facing constant rehabilitation – lots of gym work, physio and massage – and won’t receive an ‘end assessment’ for another two years. He’s been in the Spinal Ward of Royal North Shore Hospital since the day of the accident.
So to say life has dramatically changed for Pat, Nicky and their boys over the last three years, is an understatement… yet the entire family remains remarkably positive.
“Yes, life has definitely changed”, says Nicky, “but the way we see it, we still have our family, and life can get back to the way it was, if with some modifications.”
“Yes, life has definitely changed”, says Nicky, “but the way we see it, we still have our family, and life can get back to the way it was, if with some modifications.”
Pat joined in saying, “The boys are still incredibly upbeat. They’re tough, still cheeky and certainly haven’t lost their senses of humour”.
(Editor’s note: that great sense of humour can be seen one of Fletcher’s latest social media post where he mapped the path he took on his wheelchair outing earlier this week!)
“We’ve set a goal to have a family holiday in Canada in 2025, where Fletch can enjoy some adaptive skiing while Levi snowboards. That’s the thing… whatever life throws at you, there are always things you can do to remain positive. Who knows? Fletch could end up a Paralympian.”
“That’s the thing… whatever life throws at you, there are always things you can do to remain positive. Who knows? Fletch could end up a Paralympian.”
Pat’s sister Aine has organised a GoFundMe campaign to raise the funds needed to live the modified life that Nicky mentioned.
The ongoing weekly medical bills alone are mammoth, on top of which will be renovations to their home to accommodate the boys’ disabilities and illness as well as a family car tailored to their needs and hopefully a modified vehicle that will enable Fletcher to drive and as Pat says, “look like everybody else behind the wheel”.
The prognosis for both boys is unclear. There’s a new drug for VHL patients that’s been approved in the U.S., but not yet in Australia. Belzutifan could be a complete game-changer for Levi as it’s proven to shrink tumors and would break the cycle of endless surgery he’s currently facing. Unfortunately, once Belzutifan is approved for use here, it will come with a price tag of some $29,000 per month. And with so few patients throughout the country, it’s unsure if the drug will ever be a part of the PBS and therefore available at a Government-subsidised price.
Meanwhile, just the ongoing cost of the regular massages Fletcher needs along with visits to doctors, physios, OTs and more will continue to climb. Fletcher wrote on his own public instagram account, “The doctors have diagnosed me as a paraplegic. I have no movement from the waist down and no one can say whether it will come back/how much of it will come back. Like I said, I’m going be in hospital/rehab centres for about 4 months but I’m super determined to get the best rehab results possible.”
So the Crowleys face an expensive future and Aine is hoping to raise $500,000, both to help cover the mountain of cost and also support advancing medical research and clinical trials that could potentially change the course of the boys’ lives. At time of writing, the appeal has raised over $200,000 from caring donors.
“The support we’ve received has been amazing”, says Nicky. “It seems the whole community has got behind us, with even plumbers and carpenters offering their time to help us. We’re so very grateful.”
“It’s great too that the local media is publicising our story”, says Pat. “It’s so important to spread the word about VHL, because very few people know about it and yet its effects are devastating.”
We encourage our readers and in fact, all locals who live on the beaches, to get behind the appeal to help out this inspirational family. Please head to the GoFundMe campaign and lend a hand.
