General News
11 August, 2022
Carisbrook Football Netball Club rally around Hunter family
“Isla and another little girl in Melbourne have Classic Infantile Batten’s Disease (CLN1). It is misdiagnosed a lot as autism and stuff like that early on, and it’s very hard to get to the bottom of. It took us a year, maybe a year and a half...
“Isla and another little girl in Melbourne have Classic Infantile Batten’s Disease (CLN1). It is misdiagnosed a lot as autism and stuff like that early on, and it’s very hard to get to the bottom of. It took us a year, maybe a year and a half until we finally found out, which of course we wish we never had to, but here we are,” Harley Hunter says.
Harley, and his family, have had their fair share of events that have provided challenges and changes over the past few years.
Three-year-old daughter Isla’s diagnosis, building their new house, and Harley’s move from Wickliffe/Lake Bolac in the Mininera and District Football League to Carisbrook over the 2021 off-season have been some of the things the family have had to navigate in the midst of a pandemic.
The diagnosis of CLN1 for Isla, however, has provided the greatest challenges for the Hunter family. At the moment, there is no known cure for the neurological disease, which, according to the Batten Disease Support and Research Association Australia (BDSRA), is caused by mutations in the CLN1 gene.
Common symptoms that Isla experiences as a result of her diagnosis include irritability, developmental arrest, a slowing of the head circumference growth rate, poor muscle tone, myoclonic seizures and progressive vision loss. Many who are affected, sadly, die in early to mid-childhood.
An estimated one in 100,000 births worldwide are affected by Batten disease, with BDSRA estimating that there are around 50 people who are living with a form of the disease in Australia.
For Carisbrook star Harley, his move to the Redbacks in 2022 has provided him with a great release from the around-the-clock care he and his family give to Isla, and now the team is giving back for their cause, orchestrating a fundraising family day for Isla to be held this weekend, which will provide great leverage to help her fight with CLN1.
“The Redbacks have gone above and beyond for my family and I. It’s incredible. It’s hard to put into words how good they have been support-wise, I can’t really explain how grateful we are or what they mean to us, it’s been awesome,” he said.
“They’ve made the cause bigger than football. It’s more than just a game.
“The ability to have the support and help from others is a big reason why I went to Carisbrook. For a few years, I’d been heavily relied on in football, but going to Carisbrook with the support, the structures and the community that is there, there’s plenty of good players and coaches so you don’t feel that pressure.”
The Redbacks will take on Talbot tomorrow — a team that has helped out greatly in the Hunter family’s fight for Isla over the last 18 months, opening a donation account in May last year.
While in isolation, the Redbacks will be looking for a big win to maintain second spot in what is a fierce top four race within the Maryborough Castlemaine District Football Netball League ladder, for
Harley, the game means so much more. It’s a special day to play alongside his mates — from both teams — in support of his beloved daughter.
“I have a few mates at Talbot that I’ve played footy with in the past at Gordon, and the awareness has spread far and wide,” he said.
Carisbrook will be holding a raffle in support of Isla for their family day event, as well as Auskick at half time of the senior match, NetSetGo at half time of the A grade netball match, and a special mothers and daughters twilight football exhibition game following the senior men’s match.
These ideas have largely been the brainchild of the Redbacks’ A grade netball playing coach Amelia Jarvis, who brought former Australian Diamonds netball captain Madi Browne to help out with the team a fortnight ago as further support for Isla’s cause.
Harley is incredibly grateful for everything Jarvis has done in support of his family, as well as the Redbacks.
“You see Amelia’s influence everywhere. Everything she’s done, it wouldn’t be possible without her, and for her to do it off her own bat, having a busy life as a netball coach and work and everything else she does, for her to make this into a massive thing is amazing. If there were more people like her in the world, it’d be a much better place,” he said.
“It’s been a snowball effect. Amelia rolled the snowball down the hill and it just got bigger and bigger. All the women at Carisbrook have jumped on board for Isla and it’s really special.
“The mothers and daughters game will be an amazing spectacle — it will probably eclipse our game in terms of excitement.”
Teal hair ribbons will also be sold at tomorrow’s match from 8.30 am, with the words Fighting For Isla printed on them. They will be available for a gold coin donation. As Harley explains, the teal colouring is significant for CLN1 awareness.
“The teal and the orange represents Batten’s disease and the research that is done to find a cure for the disease, similar to pink ribbons for cancer. It’s special,” he said.
Harley reserves praise for one more very special person in his life, who has provided the most support of all in the fight for Isla.
“My wife, Nikita, has been incredible throughout. She’s mind-blowing,” he said.
The raffle, set to be drawn at half time of the mothers and daughters game, features multiple prizes, such as a $5000 landscaping package, a two-night stay at a Moama holiday house, a handmade outdoor wooden chair set with a table, and red gum wood, with tickets selling for $5 each.
To check out details for the raffle, visit Carisbrook Football/Netball Club on Facebook.
If you wish to donate directly to Isla Hunter’s Go Fund Me page follow this linkhttps://www.gofundme.com/f/help-isla-hunters-battle-with-battens-disease?qid=df86a50b68ec8bac37b175c9aebc1175
