JESSICA BATTLES A HIDDEN KILLER
HOW YOU CAN HELP RAISE MILLIONS FOR KIDS
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.