COMMUNITY spirit will shine bright in Warracknabeal at the weekend as residents gather to support one of their own and raise awareness for a little-known medical condition.
Julianne Phelan and her family will lead the NF Hero March – one of seven across the country – on Sunday to shine a light on neurofibromatosis, which causes tumours to grow on nerves throughout the body.
It affects one in every 2500 people.
Mrs Phelan’s son Charlie was diagnosed with NF type 1 in 2012 at age 7, after his principal noticed he was having trouble learning at school.
The diagnosis started a physical and emotional rollercoaster for the family.
“Every case of NF1 is different, which makes it all that much harder to deal with as you just don’t know what to expect,” Mrs Phelan said.
“We have had specialist appointments in Melbourne, Ballarat and Mildura, many hours at the Royal Children’s Hospital – including 12 months of chemotherapy for a brain tumour, brain surgery, MRIs, blood tests, x-rays, blood transfusions, ultrasounds and the list goes on.
“Charlie still has his brain tumour and it has been stable since finishing chemo in May 2014.
“Charlie’s team of specialists consists of about 12 doctors, as NF can affect so many parts of the body. Now we are usually down at the children’s hospital once every six to eight weeks.
“Charlie is now in year seven. It gets a bit tricky because as part of NF he has a learning difficulty, which puts him a long way behind the rest of the class. But the teachers are working to accommodate that.
“We also have a 17-year-old daughter completing year 12 this year. When Charlie was first diagnosed we also had to think of her, even though a lot of focus was on Charlie.”
The family’s experience with Charlie’s diagnosis spurred them to start raising awareness and money for NF, which is more common than cystic fibrosis, muscular dystrophy and Huntington’s disease combined.
In the past four years, they have raised close to $15,000 for the Children’s Tumour Foundation, which is dedicated to providing information and support, awareness and money to develop effective treatments and find a cure for NF.
Through fundraising, the foundation has been able to employ a support worker based in the Royal Children’s Hospital, who has helped the Phelans through their journey.
And while this journey has come with incredible challenges, there have also been moments of hope and elation.
In July, test results from an MRI on Charlie’s brain and spine found his tumour had shrunk a small amount.
“It was such a surreal moment for us to hear such good news,” Mrs Phelan said.
“NF1 will never go away – Charlie has it for life.
“We as a family just learn to deal with it and continue to spread awareness about the disease whilst raising money.
“Our little town of 2500 people has been the best support for us that you could ever want.”
More than 130 people have registered for Sunday’s five-kilometre march, which will leave Warracknabeal Lions Park at 9am.
More people have registered for the Warracknabeal event than any of the capital city marches.
Mrs Phelan said people could visit www.nfheromarch.com.au or call her on 0448 564 353 for more information.
She said people could also visit the event page on Facebook.
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