Jordan was just two weeks old when he was diagnosed with cystic fibrosis, the most common life-threatening recessive genetic condition affecting Australian children.
Within days of the diagnoses, Jordan and his family arrived at the Royal Children’s Hospital and, according to Jordan’s mum, Sheridan, “learned just how different our lives were going to be.”
Cystic fibrosis affects a number of organs in Jordan’s body, especially the lungs and pancreas, by clogging them with thick, sticky mucus.
Children with cystic fibrosis get frequent lung infections that affect their breathing and ability to exercise, and they often struggle with getting the nutrition their bodies need for healthy growth and development.
As a result, Jordan requires daily physiotherapy to dislodge mucus, as well as enzymes and other tablets to help his body digest food and absorb essential vitamins, minerals, proteins and fats. Jordan takes six tablets before breakfast and daily swallows 20 tablets.
"I’m really good at taking tablets. “I can share my tips on the best ways to do this, too!” Jordan said.
In just 10 years, Jordan has experienced many infections, serious complications relating to cystic fibrosis, hospital admissions, clinic visits and daily treatments due to his condition. This amazing little boy even learned to walk during one hospital admission, despite having a line inserted into his well bandaged foot! Last year alone, Jordan spent six weeks in hospital.
Jordan has also endured operations to remove polyps from his nose, decreased lung capacity, and bronchoscopies – a slender tube inserted into his airways. Like many children with cystic fibrosis, Jordan’s pancreas isn’t digesting fats, vitamins and proteins. As a result, in the future he may need feeding through a gastrostomy button inserted into his stomach.
There is currently no cure for cystic fibrosis. Thanks to groundbreaking research, the life expectancy for children with this condition is now around 35. Only 20 years ago, children with cystic fibrosis rarely lived beyond their teens.
Sheridan knows firsthand the benefits of research. When their second son, Aidan, was born he also had cystic fibrosis. Sheridan said she was amazed at the difference in information and outcomes in the seven years since Jordan was born.
"Life expectancy has increased – we were told Jordan would live until around 30, and now Aidan could expect 35 years or more."
"[That's] five more years in just over seven year's research! And there are new medications and new treatments – it’s so exciting!”
Sheridan and husband, Chris, have also included Jordan in clinical trials and research studies. “These have resulted in information that can help Aidan and so many others,” Sheridan said.
“This makes us realise how important these studies are and the difference they do make. If researchers can keep moving at this pace, even increase it, then our boys will be able to live longer and healthier lives!”
Jordan is happy to be involved with research too.
"I don't mind because it may help Aidan live longer when he is older as well as other little kids with CF."
Professor Peter Sly from the Queensland Children’s Medical Research Institute (QCMRI), is a world-renowned expert in childhood respiratory diseases. Professor Sly is leading a team to conduct research into cystic fibrosis, asthma, and lung function in young children.