Baldivis mum Danielle Green’s crusade for mandatory genetic testing stems from the heartbreaking loss of her children, Sonny and Airlie, to a rare genetic mutation called PPA2. The devastating journey began in 2021 when nine-month-old Sonny tragically passed away after going into cardiac arrest at Rockingham hospital. Despite efforts to save him, Sonny lost his battle at Perth Children’s Hospital, leaving his cause of death shrouded in mystery.
It wasn’t until the birth of their daughter, Airlie, in 2022 that the Greens unraveled the genetic puzzle. Airlie’s sudden cardiac arrest at just five months mirrored Sonny’s symptoms, prompting doctors to delve into genetic testing. The results revealed PPA2 as the culprit behind Sonny’s death and Airlie’s subsequent passing at 18 months.
The Greens’ harrowing experience sheds light on the prevalence of unknown causes of death among young individuals, with genetic mutations accounting for a significant portion of sudden cardiac fatalities. This alarming statistic propelled Ms. Green to launch the Coroner’s Project alongside Rachael Casella. Ms. Casella’s own tragedy, losing her daughter to spinal muscular atrophy, further fueled the advocacy for widespread genetic testing.
While Western Australia currently utilizes genetic testing at the State Coroner’s discretion, the process lacks uniformity across other regions. Ms. Green’s mission aims to make genetic testing a mandatory protocol nationwide, emphasizing the vital role it plays in unraveling medical mysteries and preventing future tragedies.
The stories of Kathleen Folbigg and Ms. Green underscore the potential ramifications of overlooking genetic testing. Ms. Green’s recount of the intrusive autopsy process and the emotional toll it takes on families underscores the urgent need for systemic changes in post-mortem procedures.
The financial barrier to genetic testing remains a concern, with costs estimated around $4000 per test. Despite talks of healthcare system updates, tangible progress in implementing standardized genetic testing protocols has been slow. Ms. Green and Ms. Casella’s Change.com petition seeks government action to streamline genetic testing in coronial investigations, garnering support from key organizations in the medical research field.
As the Coroner’s Project gains momentum, the push for mandatory genetic testing serves as a beacon of hope for families grappling with unexplained losses. By advocating for policy changes and raising awareness about the lifesaving potential of genetic testing, Ms. Green and her allies strive to prevent future tragedies and bring closure to grieving families nationwide.
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