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Mum's agony: Disease killed my son, but it won't take girl

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

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 (November 18).

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.

 

Children celebrate the $12m raised during the 2016 Channel Nine Telethon that supports the Children's Hospital Foundation.
Children celebrate the $12m raised during the 2016 Channel Nine Telethon that supports the Children's Hospital Foundation.

Tune in to TV to dial up support for sick kids

THIS year's Channel Nine Telethon organisers hope to dial up $11 million of support for our sick kids.

The star-studded annual event will be broadcast across Queensland and Northern NSW on Saturday (November 18).  

It raises money for the Children's Hospital Foundation.

The foundation provides vital support for young patients attending Lady Cilento Children's Hospital, 60 per cent of whom come from regional Queensland and Northern NSW.

The telethon has raised about $32 million since 2014.

That money has been invested in life-saving medical research, vital pediatric equipment and for "comfort and entertainment" services for ill children and their families.

The foundation has committed $5 million to fund research into priority health areas including cystic fibrosis, childhood nutrition and brain cancer.

"The survival rates for brain cancer have not improved during the past 30 years and only 20 per cent of children with the disease will survive," foundation CEO Rosie Simpson said.

"And if they do survive, they face really chronic health issues throughout their lives."

The foundation offers a significant bright spot in the lives of children who stay at Lady Cilento.

It offers the in-house Juiced TV where kids get to star in their own television show.

It also provides the fun Clown Doctors, volunteers who entertain children with books, movies and games so parents can take a break, the Cuddle Carers program for babies, music therapy, pet therapy, special events and hospital visits by famous people.

"We also help pay for clothes for the kids, we offer travel grants for families to join their child in hospital and we fund the social work program so the families are supported," Ms Simpson said.

"The idea is to try to ensure the children have as normal a time as possible while they are in hospital."

The telethon starts at 7pm on Saturday and there will be a special documentary on the Lady Cilento and its patients from 5pm.

The entertainment line-up includes Leo Sayer, Pseudo Echo, The Voice 2017 winner Judah Kelly, Eurovision star Dami Im and rock band Dragon. - NewsRegional

Donate at 9telethon.com.au or by phoning 1800 909 900.

Topics:  channel nine channel nine telethon children's hospital foundation telethon editors pcks fundraising health lady cilento children's hospital sick kids

News Corp Australia

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