Heroes don capes for NF march
Warracknabeal’s Charlie Phelan was a happy-golucky seven-year-old when he was diagnosed with an incurable condition few people have even heard of.
Five long and tough years later, he and his family are ‘NF Heroes’, dedicating time and effort to raise money and much-needed awareness for the Children’s Tumour Foundation.
The not-for-profit organisation provides information, resources and support services to children, their families and adults living with neurofibromatosis, or NF.
People with NF develop benign tumours called neurofibromas, which grow around the body’s nerve cells – under the skin’s surface, deep in the body including the spinal cord and brain.
These growths can cause impaired vision and balance, and in some cases, blindness and deafness.
Charlie’s NF journey started following a meeting between his parents, Julianne and Mark, and his school principal.
“We had the meeting because Charlie was having trouble learning,” Mrs Phelan said.
“The principal suggested we have him tested to rule out any laziness or naughtiness.
“We saw a paediatrician and he knew straight away because he saw what are known as café au lait spots on his body.
“The doctor had seen it before and knew straight away Charlie had NF1.”
For many, café au lait spots are harmless. They can, however, indicate an underlying genetic problem.
Mrs Phelan said Charlie had genetic counselling and saw an ophthalmologist before an MRI revealed he had a brain tumour.
Charlie underwent 12 months of chemotherapy at Melbourne’s Royal Children’s Hospital.
“We’d go down once a month, but sometimes after chemo his blood would play up and we’d have to go back to Melbourne, or Ballarat,” Mrs Phelan said.
“We were constantly in the car and constantly doing whatever we had to do to keep the tumour stable.
“The tumour isn’t cancerous, but it pushes on other parts of the brain.”
In 2015, a routine MRI showed fluid on the brain, resulting in surgery.
“It was tough, but Charlie has bounced back well, particularly since he’s had so many tests and years of being poked and prodded.”
Charlie still goes to the Royal Children’s Hospital every six to eight weeks for regular check-ups and MRIS.
“Things won’t quieten down for us,” Mrs Phelan said.
“It is just a case of controlling it – we simply have to live with it.”
Mrs Phelan said there was limited support for children with NF when her son was first diagnosed in 2012.
“It was a huge shock, particularly because we’d never heard of it before,” she said.
“When we started going to the Royal Children’s Hospital there was no particular support. We had no idea what to do or where to turn.
“When Charlie was first diagnosed, the Children’s Tumour Foundation was just a minute group of people. Now, it has enough funding to employ a support worker at the Royal Children’s Hospital.”
The Phelan family has played a major role in supporting the foundation, raising more than $14,000 in the past four years.
“As a family we are very passionate about raising awareness for NF, especially NF1, as it is more common than cystic fibrosis but no one knows about it,” Mrs Phelan said.
“The Children’s Tumour Foundation doesn’t get any government funding so we support everything they do.
“Our little town of 2500 people has been the best support for us that you could ever want and now with the NF Hero March coming up, once again they have jumped on board.”
The Phelans will host a leg of the 2018 NF Hero March at Lions Park, Warracknabeal, on Sunday at 9am.
Mrs Phelan said major cities including Adelaide, Brisbane, Canberra, Melbourne, Perth and Sydney would also host a march.
She said the Warracknabeal march was leading the way in terms of registrations, with more than 130 people signing up to participate.
“We’ll be doing two, 2.5-kilometre half loops of the creek, so people can just do one of the loops if they like,” she said.
Strawberry the Clown will pay a visit and there will also be face-painting and interactive games such as bocce and kubb.
“There will also be a coffee van,” Mrs Phelan said. “We’re encouraging everyone to wear yellow, the colour of NF, and people who have already signed up will receive capes. “People can also sign up on the day.” Mrs Phelan said while collecting money was important, so was raising the profile of the condition.
“The more people who know about it and get involved in the march, the more awareness there is,” she said.
“We are so lucky to have the support of our family, friends and the community in general.
“The Warracknabeal community has been fantastic over the past five or so years of this journey. We wouldn’t want to be anywhere else.”
SOME HEROES WEAR CAPES: Warracknabeal’s Grace, 17, Julianne and Charlie, 12, Phelan will don yellow capes for an NF Hero March at Lions Park on Sunday. The march, one of several across Australia, will raise money for the Children’s Tumour Foundation. The Phelans became NF heroes after Charlie was diagnosed with neurofibromatosis type one, or NF1, in 2012. Picture: PAUL CARRACHER