Three-year-old, William Marriage with his mother, Alysa Marriage.William is involved in a Cystic Fibrosis study. The Red Rose is the symbol of
Three-year-old, William Marriage with his mother, Alysa Marriage.William is involved in a Cystic Fibrosis study. The Red Rose is the symbol of "65 Roses" May 2019 Bev Lacey

Toowoomba boy part of life-changing cystic fibrosis study

A TOOWOOMBA boy with cystic fibrosis is part of a world-leading study that could change the quality of life for children with the disease.

Three-year-old William Marriage is part of the study, led by the Queensland Children Hospital's Dr Amanda Ullman, looking at how much-needed antibiotics are administered to patients.

William's mum Alyse Marriage said William was recently at the hospital for treatment, but might have to go back soon if he was still culturing bacteria in his lungs.

"Fingers crossed he's totally rid of it," she said.

"But that's where the importance of this study comes in.

"If you have to be in hospital frequently, which we hope he doesn't, we hope that everything they're doing in these studies will protect his veins and make sure drugs are administered as best possible."

 

Three-year-old, William Marriage with his mother, Alysa Marriage.William is involved in a Cystic Fibrosis study. May 2019
Three-year-old, William Marriage with his mother, Alysa Marriage.William is involved in a Cystic Fibrosis study. May 2019 Bev Lacey

Dr Ullman, who is originally from Toowoomba, said one of the tools in treating cystic fibrosis, which is where mucus produced by the lungs and intestines is thick and sticky, was administering antibiotics intravenously to treat bacteria in the lungs.

"In order to give it to them we have to access the vascular system, but as these children have to have antibiotics a few times a year just inserting a drip is not effective as an IV could stop working in middle of treatment," she said.

"In the last 20 years we've been inserting a central catheter, a PICC.

"It's inserted into the upper arm and a tube goes all the way to the heart, and through that tube they're given antibiotics a couple of times a week.

"That requires a general anaesthetic."

 

Three-year-old, William Marriage is involved in a Cystic Fibrosis study. May 2019
Three-year-old, William Marriage is involved in a Cystic Fibrosis study. May 2019 Bev Lacey

Dr Ullman said a PICC could impact the veins and general anaesthetics could often be traumatic for children and families.

She said the study was looking at using a midline catheter as an alternative.

That catheter is inserted just below the armpit and does not require a general anaesthetic.

"It's associated with less complications, less trauma... it's less scary for children," she said.

"So far it's looking promising. Children and families have found it to be acceptable and we have been able to reduce the need for general anaesthetics.

"We're hoping children will be able to get treatment for longer as there will be less damage to vessels.

"Children growing up now, they'll still need antibiotics when they're 40, so that means we're prolonging their ability to receive antibiotics."

Ms Marriage said as a parent there was a sense of relief at the idea of having options on how to administer the antibiotics.

"Whether there is a cure at some point or not, William will have to live with the after effects of the drugs and how the're administered," she said.

"It's extremely important to get how the drugs are administered right, as this can mean a better quality of life for William.

"Before this study meant there wasn't the option."

The study is funded by the Queensland Children's Hospital Foundation.



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