The Queensland Times - - FRONT PAGE - Sherele Moody Sherele.Moody@news­re­gional­me­ Do­nate at or by phon­ing 1800 909 900. - NewsRe­gional

BARELY a year has passed since her 15-year-old son died, but Joanne Kennedy has no choice but to push her grief aside to con­cen­trate on her daugh­ter Jes­sica’s bat­tle for life.

Daniel Gauci passed away af­ter a deadly bug rav­aged his cys­tic fi­bro­sis-weak­ened lungs.

“Los­ing Daniel was the hard­est road I’ve ever trav­elled,” Joanne said of bury­ing her only son.

Daniel’s lit­tle sis­ter Jess also has cys­tic fi­bro­sis and she is strug­gling to re­cover from the same bug that ul­ti­mately cost her brother his life.

“I’ve tried to keep my head up be­cause he wouldn’t want me to be down all the time – he hated see­ing me up­set,” Joanne said from her 10-year-old daugh­ter’s ward in Lady Ci­lento Chil­dren’s Hos­pi­tal.

Joanne fer­vently hopes Jess’s story will not have the same end­ing as her son’s.

Like all CF suf­fer­ers, Jess and Daniel in­her­ited the ge­netic dis­or­der from their par­ents and they were di­ag­nosed with the life-short­en­ing con­di­tion shortly af­ter birth.

“I had no idea what this dis­ease was when Daniel was di­ag­nosed,” Joanne said.

“It was a huge blow and when Jess was born, it just took its toll on my­self and their dad. I was dev­as­tated – I could not be­lieve it. I was in de­nial for a while.”

Joanne and her hus­band sep­a­rated and the Ip­swich res­i­dent now raises her four chil­dren with the sup­port of her fam­ily and her new part­ner.

Cys­tic fi­bro­sis is of­ten de­scribed as an “in­sid­i­ous dis­ease” be­cause its im­pacts are hid­den and vir­tu­ally un­stop­pable.

CF weak­ens the lungs and the di­ges­tive sys­tem with pa­tients hav­ing to take a range of medicines to stay healthy.

“Look­ing at her now you wouldn’t think there is any­thing wrong with her,” Joanne said.

“That’s the really sad thing about CF, you can’t see it from the out­side but if you were to look in­side the lungs, the liver, the kid­ney you would see some­thing really ter­ri­ble.”

Even­tu­ally the dam­age to the or­gans be­comes so bad that pa­tients will die with­out a lung trans­plant.

Like Daniel, there is a strong chance Jess will not be able to have a life-sav­ing or­gan do­na­tion.

“Daniel had the same in­fec­tion as Jess – it caused so much lung dam­age that he was not able to be put on the trans­plant list,” Joanne said. “Jess is in the same boat. “Even if they take out her lungs the bug will still be in her wind­pipe, her si­nuses and other ar­eas and it will just at­tack the new lungs.

“This par­tic­u­lar bug is re­sis­tant to most med­i­ca­tions.

“Ba­si­cally, we are run­ning up the hill but get­ting nowhere and we are just wait­ing for a new drug that will hope­fully make her bet­ter.”

Not so long ago CF suf­fer­ers rarely sur­vived into young adult­hood but ad­vances in treat­ments mean they can live un­til about 37 years old.

But stay­ing healthy means con­stant “tune ups” in hos­pi­tal in­volv­ing in­tra­venous med­i­ca­tions and nu­tri­ents, their nor­mal tablet rou­tines and in­ten­sive phys­io­ther­apy de­signed to keep the lungs func­tion­ing as well as pos­si­ble.

Joanne has spent an in­or­di­nate amount of time at Lady Ci­lento with both her kids.

“It’s really my sec­ond home – we’re a part of the fur­ni­ture now,” she said.

Jess is one of 2118 Ip­swich res­i­dents treated at Lady Ci­lento last fi­nan­cial year.

The young­ster is tak­ing on a big chal­lenge, help­ing to pro­mote the an­nual Chan­nel Nine Telethon sup­port­ing the Chil­dren’s Hos­pi­tal Foun­da­tion on Sat­ur­day.

The ap­peal aims to raise $11 mil­lion.

As well as sup­port­ing pa­tients at LCCH, money raised dur­ing the telethon pays for vi­tal med­i­cal equip­ment, re­search and a range of med­i­cal ser­vices at Lady Ci­lento and through­out re­gional Queens­land and North­ern NSW.

When Jess is in hos­pi­tal she reg­u­larly calls the Chil­dren’s Hos­pi­tal Foun­da­tion pa­tient and fam­ily sup­port team and asks for bed­side play vol­un­teers to visit her.

Joanne said the foun­da­tion was a vi­tal part of Jess’s ther­apy and she would be lost with­out the play­ful dis­trac­tions.

“The vol­un­teers give me time out by play­ing with Jess,” Joanne said.

“They are mar­vel­lous – the amount of sup­port that they give us un­be­liev­able.

“They know what you’re go­ing through and they know that par­ents need time out.”

Joanne urged Queens­lan­ders to dig deep for the telethon.

“Please do­nate be­cause your money will help raise aware­ness of CF and sup­port chil­dren like Jess and Daniel while they are in hos­pi­tal,” she said.


YOU CAN HELP: Ip­swich lass Jes­sica Gauci takes a break from treat­ment for cys­tic fi­bro­sis at Lady Ci­lento Chil­dren's Hos­pi­tal.

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