Heroes don capes for NF march

The Weekly Advertiser Horsham - - News - BY SARAH SCULLY

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.”

Sup­port

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.”

NF Heroes

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

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