Kylie Catterick's fourth child, Josh, was her easiest pregnancy and, the midwives said, the "best delivery".
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But it wasn't until Josh was four months old the Catterick family discovered he was born with a serious brain tumour, leading to multiple surgeries over his short life.
The brain cancer and surgeries ultimately left Josh with permanent side effects including cerebral palsy, autism and epilepsy, leading to his family connecting with several patient support groups in an effort to help others facing similar circumstances.
In particular, the family look with cautious optimism for other families to the promise of a $10 million Children's Medical Research Institute initiative called ProCan.
Kylie said one of the most difficult things for families with children with genetic illnesses and brain cancers was that they were faced with treatments that were designed for adults which left children with low chances of survival.
But she said the ProCan project was aiming to build "a massive database" of cases of children with brain cancers and similar problems, recording what treatments worked, and didn't work, and making them available to specialists in order to try to find more suitable and successful treatments.
The project aims to build a better understanding of childhood cancer, through analysing 70,000 cancer samples across the globe over the next five to seven years, creating a tool that could help specialists diagnose problems and identify treatments earlier.
"Brain cancers are killing more children than any other disease, and with a lack of treatments, especially newer immunotherapy treatments, available for children in Australia, this database could help link specialists with treatments that could help," Kylie said.
"We've been able to link in with a number of support groups across Canberra and Sydney, but there's barely a week that goes by that we don't hear about another family losing their child."
She said while many disorders, like the autism Josh has alongside his other conditions, children's genetic diseases and brain cancers attracted fewer donations from the community.
Kylie will be one of many celebrating Jeans for Genes Day on Friday August 4, and urged anyone who could attend a function or donate to the institute to do so.
"I feel like I need to do as much as I can to help other families, so even if one more person attends a fundraiser this year it will be worth it," she said.
Kylie said Canberrans who wanted to help could join her and others for a cocktail fundraiser night at the Urban Pantry in Manuka, at $55 a head.
For more information about the cocktail night, call Velinka Vecchi on 0411 119 376, or to register and donate to the national fundraiser, go to: jeansforgenes.org.au
