Patient stories

From gastro and chickenpox, to a respiratory infection and, ultimately, a condition called ‘Kawasaki disease.’ It was the search for the right diagnosis for her son that inspired Joce to become a nurse and advocate for patient families.

Joce said the ordeal began when Reuben, 2, started vomited profusely, became feverish and irritable and was covered in a rash.

At an urgent care clinic, Reuben was diagnosed with gastro and sent home but his symptoms didn’t go away.

“We knew something wasn’t right, so I took Reuben to the emergency department for another opinion,” Joce said.

Image: Reuben in hospital.

“They initially suspected him of having chickenpox, but his diagnosis kept changing and symptoms worsening. Nothing became clear until nine difficult days in. While Reuben’s illness didn’t start with a cough, he was diagnosed with respiratory syncytial virus (RSV) and bacterial pneumonia.

“But these respiratory infections didn’t seem to fit as Reuben was also experiencing extreme changes to his behaviour and had a persistent high fever.”

After pursuing answers and yet more testing, Reuben was finally diagnosed with atypical Kawasaki disease.

Kawasaki disease is a serious illness characterised by blood vessel inflammation, most likely in response to one or more infections. The condition is not contagious and may be misdiagnosed as scarlet fever or measles. Thousands of people globally are diagnosed with Kawasaki disease every year with one case daily in Australia.

Image: Reuben (right) with his dad Ben and little brother Jethro.

“We were so grateful to have answers and Reuben could receive the right treatment,” Joce said.

“Sadly, the chronic inflammation had already weakened blood vessels in his heart and caused an aneurysm to form. But after receiving regular injections and steroids, he is now doing much better.

“The experience has inspired me to follow my dream of becoming a nurse where I can advocate for families that may not feel heard.

“It’s so important parents and healthcare professionals work as a team, especially when a child is going through something serious and not well very understood like Kawasaki disease.”

Joce said she hoped awareness of the illness improved and families could get answers sooner.

Image: Reuben now, happy and healthy.

“In a perfect world, we would have a definitive Kawasaki disease test, and I hope Murdoch Children’s Research Institute (MCRI) is the first to crack it,” she said.

Healthcare professionals, parents and carers recently attended a free hybrid family and health practitioners’ information day on Kawasaki disease at MCRI.

“It was so exciting that experts and families could come together to share knowledge and experience, so more children get diagnosed quickly and avoid permanent heart damage,” Joce said.

Read more about MCRI’s Inflammatory Origins research.