News & Events

Sarah, aged five, was born with a rare lung disease, Interstitial Lung Disease. It means she needs to be connected constantly to her oxygen, needs help feeding and must be cared for by a large team of health professionals. The financial cost to her family has been substantial. “In the first year of life we were $18,000 out of pocket for medical expenses alone. We also had to install air condi...

Grandmother Marmingee Hand from remote Fitzroy Crossing in Western Australia has a full time job looking after the two nephews and two grandchildren who live with her – especially as all have been diagnosed with Foetal Alcohol Syndrome Disorder (FASD). “It’s a challenge every day, but my husband and I accommodate their needs, every day it’s different,” she says. The Kids Research Institute...

Little Isa Al Boush is one of only two children in the world with a particularly unusual form of a mitochondrial respiratory chain disorder, complex III deficiency. Using sophisticated gene sequencing techniques, researchers at Kids Research Institute discovered a new gene which causes his disorder. Isa was just five months old when he first got sick. He developed a fever and within minutes wa...

Adolescence is a time of upheaval for anyone – but young people with chronic conditions have the added demands of taking medications and attending medical appointments. When she was 13, Brooke received a double lung transplant because her lungs were failing due to cystic fibrosis. For nearly the whole of Year 8 she was confined to bed and on oxygen, unable to move without a wheelchair and the...