20/05/2026
When Jacob was 9, he felt tightness in his chest while walking to school.
After seeing a heart specialist at The Children’s Hospital at Westmead, Jacob was diagnosed with hypertrophic obstructive cardiomyopathy, a hereditary condition that leads to thickened heart muscle. A relatively common heart condition in adults, it’s rare in children.
Jacob says, “It felt like heatstroke. I often felt really hot, sometimes had headaches, and my legs would hurt.”
Through his specialist Dr Claire Irving, Jacob joined a clinical trial for a heart medication normally only available to adults.
Jacob’s mum Karina says, “Before the trial, it wasn’t a question of if he’d need surgery, but when.”
“I saw a difference immediately. At first we didn’t know if he was in the medication group or the placebo group, but then we went on holiday to Italy earlier this year, and he was able to do 20,000 steps a day. We still have to be careful, but there’s so much he can do now.”
Thanks to this trial, there is now hope more families may be able to access this medication in the future.
SCHN currently has over 100 staff working on more than 260 active trials involving 1500 children and young people.
This International Clinical Trials Day, we celebrate all our clinical research staff making a difference for families like Jacob's.
📸 Jacob, his family, and members of his Westmead Clinical Research Centre trial team