Greg Dunn will never forget the heart-wrenching moment he and his wife learned that their two year old son had cystic fibrosis (CF). It was half-way through the pregnancy of their second child.
As new parents, Greg and Heidi barely had time to come to terms with the diagnosis before being hit with a new harsh reality – their second child could suffer the same fate.
“We got two-out-of-two babies affected, which was pretty unlucky,” recalls Greg, who is now a father of three. Their youngest child doesn’t have the disease.
“When the kids were born they were talking about a life-expectancy into the early-30s, now they’re talking about it being late-30s, and it goes up every year.”
The incurable genetic disease primarily affects the respiratory and digestive systems. When both parents are carriers there is a one-in-four chance of the baby being affected with CF.
Fast forward to present day and son Aidan, aged 17, and daughter Mya, aged 15, have learned to live with their disease. They stoically embrace up to 3 hours of daily treatments and numerous 2-3 week hospital admissions during each year for their ‘tune-up’.
“The kids take up to 25 tablets every day, including enzymes, antibiotics, vitamins, salt and also calorie supplements,” Greg explains.
“Twice a day we do treatments to remove excess mucus which clogs their lungs, and they take nebulised antibiotics and other drugs.”
Both children have been part of clinical trials to help improve their condition. Mya has responded to one trial with great success, but Aiden hasn’t been able to reap the same benefits due to concerns the drug may worsen his liver disease.
The good news is a new $15 million Queensland Cystic Fibrosis Research Program has now been created to help improve outcomes for patients with CF in Queensland and elsewhere.
The program will focus on two new research projects; the Early Life Origins of CF lung disease (the ELO study) and the Mycobacterium abscessus (MABS) pulmonary disease program.
The ELO study will recruit patients from birth to 30 years of age to develop disease trajectories.
Both research projects aim to improve clinical diagnosis of lung disease and its progression across early life and adulthood.
“We will use novel lung function tests, novel MRI techniques, and develop new specific biomarkers that show lung disease activity earlier than currently possible,” UQ researcher, Professor Peter Sly explains.
“Findings from this study will increase our knowledge of why lung disease progresses, and will offer a better understanding of the relationship between early lung disease and loss of lung function.”
Major funding to support this program has been awarded to the Queensland researchers by The University of Queensland, the Children’s Hospital Foundation and the American-based Cystic Fibrosis Foundation. The clinical trials have attracted funding from the Australian Department of Health Medical Research Future Fund and an anonymous donor, as well as support from the Thoracic Society of Australia and New Zealand. Research support will also be provided by the Children’s Hospital Foundation, The Prince Charles Hospital Foundation and UQ.
The research will be carried out in partnership with the Children’s Health Queensland Hospital and Health Service, the Metro North Hospital and Health Service and The Prince Charles Hospital.