‘He­roes’ walk for Nf-free fu­ture

The Weekly Advertiser Horsham - - News - BY LOTTE REITER

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.”

Sup­port

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

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