‘Heroes’ walk for Nf-free future
Warracknabeal’s Charlie Phelan is a superhero. He wears a cape, fights ‘fearsome foes’, and has the power to help others.
The 13-year-old also has a chronic and incurable genetic condition called neurofibromatosis, or NF1, where benign tumours grow around the body’s nerve cells.
Charlie is fighting for a future where this condition ceases to exist. And his family and community are supporting him every step of the way.
The Phelan family, along with The Children’s Tumour Foundation, is hosting a third annual NF Hero Day in Warracknabeal on August 25.
The event, also hosted in major Australian cities, starts at 11am at Lions Park and includes a two-and-a-half and five-kilometre walk followed by a barbecue and children’s activities.
Every person who registers will also receive a cape to wear in support of the ‘superhero’ children who battle the NF condition.
Julianne Phelan said NF Hero Day helped raise awareness and money for the Children’s Tumour Foundation, a charity that provides information, resources and support to people living with neurofibromatosis.
Since doctors diagnosed Charlie with NF in November 2012, the Phelan family has helped raise about $25,000 for the foundation.
Mrs Phelan said she felt it was her family’s role to pour their ‘heart and soul’ into fundraising and awareness efforts for a future where research could develop a cure that minimises the condition’s effects.
“It would be good to not be living on eggshells all the time,” she said.
“We’d love to see a cure. But I know that’s not going to happen straight away.
“There is a new drug trial going to be implemented soon that might help with the reduction of the tumours, so we put Charlie’s name down for that.
“It could mean they’d be able to shrink the tumour on his brain, which would be a really positive step. But it is all quite new.”
Mrs Phelan said Charlie’s condition was multi-faceted.
In 2013, doctors detected an optic glioma, brain tumour, that was affecting Charlie’s eyesight. He also has caféau-lait spots – harmless coffee-coloured ‘birthmarks’ – on his brain and spine and a learning disability.
“There are a lot of things that come with the condition. It can be quite disfiguring,” she said.
“He doesn’t like talking about it. He hates the fact that he has to do different things when it comes to learning, and he gets frustrated when he misses out on school because we have to go to Melbourne for medical appointments.
“But because he has had it for a little while his group of friends are amazing and very supportive.”
More than 100 people have already registered for Warracknabeal’s 2019 NF Hero Day, many of which stem from the Warrack Eagles Football and Netball Club.
Mrs Phelan said about 20 footballers and 20 netballers, including family members and even supporters had registered.
“Senior coach Ryan Mckenzie has been really pushing the footballers to register for the day to support the cause,” she said.
“After training we all have tea altogether, netballers and footballers, and each week vice president Zane Jess has really pushed it to everyone to get behind the cause as well.”
She said the fact the club was talking about the cause and registering to support Charlie and the NF community was a powerful testament to the support that small communities have to offer.
“I think it says it all when you see that metropolitan centres of Melbourne or Brisbane have about 10 registrations, and Warracknabeal, with a population of 2500, has this many people registered,” she said.
“I asked Charlie the other night, ‘Do you think you are lucky to live in a small town when you have NF?’ He said, ‘Yes, because in a big city no one cares as much’.”
Mrs Phelan said the day’s activities would include a jumping castle, face painting, games and a ‘$100 for 120 seconds Hanging Challenge’.
Food and beverages caravan Black Betti and Co will also be selling coffee and drinks.
Mrs Phelan said people could register for the walk online at give.ctf.org. au/events/4/nf-hero-challenge.
Adult registration is $20 and child registration is $10.
FIGHTING SPIRITS: Warracknabeal’s Charlie Phelan, 13, front, with school mates and supporters, from back left, Jack Evans, Jaxon Moloney, Sophie Evans, Olivia Hallam and Nicola Clyne, prepare for a third annual NF Hero Walk. The fundraising event, starting at Warracknabeal’s Lions Park on August 25, raises money for the Children’s Tumour Foundation and genetic condition neurofibromatosis, or NF1. Picture: PAUL CARRACHER