5-year-old Gold Coast local and self-confessed superhero, Freddy Johnson has an extra special Christmas wish this year – to raise funds for life-changing research to combat a lung disease deemed a global epidemic.
The Lego-loving boy lives with bronchiectasis – a chronic and irreversible lung disease that progressively destroys the airways.
This Christmas Freddy and his parents, Melissa and Anthony Johnson are joining Lung Foundation Australia to raise vital funds to increase support and research for the disease.
Like many Australians with bronchiectasis, it was a long and heart-breaking four years for the Johnson family before Freddy finally received a diagnosis.
“Ever since he was little he had this chronic wet cough – he’d just be coughing for weeks and weeks,” Mrs Johnson said.
“He’d be sick, he’d be lethargic, he’d be fatigued, he’d be tired, and it was recurrent, so it was one after the other. We’d been giving him inhalers thinking it was asthma.”
For many people with bronchiectasis, the lack of awareness around the increasingly common disease often results in a significant delay in diagnosis and prolonged, unnecessary suffering.
“We had ideas of what it might have been, and we were worried that it wasn’t being diagnosed correctly. We knew it needed to be correctly identified so it could be treated before it got past the point of recovery.”
It was Mrs Johnson’s colleague at the Queensland Children’s Hospital who got Freddy an appointment with a respiratory specialist.
“We were so relieved that we had a diagnosis. This meant that we could have a plan for Freddy and hopefully put some strategies in place to prevent and relieve his symptoms.”
Now, a typical day for the Mudgeeraba family includes painful airway clearance and physiotherapy.
“We feel like the worst parents ever sometimes, especially when he is so sick. We have to make him do his physio, no matter how he is feeling. He can be crying saying his chest is hurting and he’s so tired, but he has to still do it. It has me in tears sometimes but I have to remind myself that it is all to make him better.”
Lung Foundation Australia’s Australian Bronchiectasis Registry Project Manager, Enna Stroil-Salama hopes the community will dig deep this Christmas to help ensure a brighter future for people like Freddy.
“More research is critical in order to find new treatments and provide hope for prevention and a cure,” Mrs Stroil-Salama said.
“Every dollar we receive this Christmas will support people living with bronchiectasis as well as fund life-changing research via our Australian Bronchiectasis Registry.
“The Registry is a national first-of-its-kind, and provides the connection between researchers and patients to help facilitate better outcomes for people living with bronchiectasis now and in the future.”
To make a donation, visit lungfoundation.com.au/donate
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