We are calling for national reform so that genetic testing is routinely included in autopsies of young people where the cause of death is unclear (i.e., not an accident or known illness) or would otherwise be labelled “undetermined.” Families deserve answers, and lives could be saved with this simple change.

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At 9 months old, Danielle and Leon’s beautiful baby boy Sonny developed gastro. Concerned, they took him to hospital—only for him to suddenly go into cardiac arrest and die. Their lives changed forever.

They were told the coroner’s report could take up to three years. When it finally came, it provided no answers. Sonny’s death was listed as “undetermined.” No genetic testing had been done during the autopsy, and Danielle and Leon weren’t offered carrier screening.

Months later, they welcomed their daughter, Airlie. At 5 months old, she showed similar symptoms. She too went into cardiac arrest and, though revived initially, tragically died at one year old. Two precious children. The grief is unimaginable.

After Airlie’s first hospitalisation, genetic testing revealed a rare condition: PPA2. This finding prompted testing of Sonny’s stored DNA, which confirmed he had the same condition.

If genetic testing had been done after Sonny’s death, PPA2 would likely have been found earlier. Danielle and Leon could have received carrier screening, better understood the risks, and perhaps changed the course of events.

This is just one devastating example of a gap in our current coronial system. Other families are left with only the label of SIDS/SUDS. Imagine living your life never knowing why your child died—when a genetic test might have offered clarity.

Research shows that when people under 35 die suddenly, the cause of death remains “unascertained” in around 40% of cases. That’s an extraordinary number of families left with unanswered questions.

Genetic testing costs around $4,000 per test, depending on the type. That cost is decreasing each year. In contrast, a coronial investigation can take years and cost far more in emotional, societal, and medical fallout.

Every grieving parent deserves to know why their child died.

Right now, genetic testing in autopsies is inconsistent across Australia. Each State and Territory has its own process. Most rely on individual forensic pathologists to decide whether testing is needed. Testing is often not ordered—despite DNA routinely being collected and stored.

Here’s what we’ve learned in our research:

- Many forensic pathologists consider testing if there’s a known family history. But 90% of babies with genetic conditions have no family history.

- Some forensic pathologists believe testing underage one has a low yield—this has been proven incorrect.

- Consent is often cited as a barrier, but consent is not required under the coronial process. Even where consent is required, it should be asked and the answer not assumed.

- Cost is used as an excuse, so many jurisdictions pass the burden to families or local hospitals to follow up and pay for genetic testing, despite the difficulties they are already experiencing after such a loss. This leads to reduced testing and inequity due to education, language, and location.

We have contacted State and Territory leaders. Some admit their processes are outdated and are reviewing them. Others dismissed concerns or claimed their systems work—despite clear evidence to the contrary.

We need your voice.

Please sign this petition to show the Federal, State and Territory Governments that current practices are not good enough. With your help, we can push for clear, consistent, compassionate protocols that ensure genetic testing becomes a standard part of autopsies in young people.

This simple, humane change could save lives and give grieving families the answers they deserve.

Please sign and share. Every signature is a step toward change.

 

*To review our research, letter to Government officials, references and letters of support from experts in the area at linktr.ee/mylifeof_love or linktr.ee/ourrarelife

** Contact coronersproject@gmail.com for enquiries