Danielle Green: Our Inspiring Ambassador and Advocate for Genetic Testing

A mother's love, a mission for change and a powerful voice for greater awareness of genetic testing.

For Danielle Green, being a mum to Sonny and Airlie changed her life in every way. Today, she is honouring their memory by advocating for greater awareness of rare genetic conditions, earlier access to genetic testing and better support for families.

Danielle and her husband, Leon, lost their son Sonny at just nine months old in 2021, following a sudden cardiac arrest. With no known family history or clear explanation for his death, the couple were left searching for answers.

In 2022, they welcomed their daughter Airlie. But at five months old, Airlie also suffered a cardiac arrest. Genetic testing revealed an extremely rare inherited condition known as PPA2 deficiency, which can cause life-threatening cardiac complications.

The diagnosis finally provided answers about Sonny's death. Despite specialist medical care, Airlie sadly passed away in May 2024 at just 18 months old.

Turning grief into meaningful change - The Coroners Project

Determined to help other families access answers sooner, Danielle has become a passionate advocate for genetic testing and rare disease awareness.

In 2025, Danielle joined forces with Lumi’s Ambassador Rachael Casella, who helped drive the landmark Mackenzie's Mission research project following the loss of her daughter Mackenzie.

Together, they established The Coroners Project, advocating for routine genetic testing following unexplained deaths of children and young people, and greater consistency in coronial investigations across Australia.

Their work aims to help families receive answers earlier, understand potential inherited risks and access appropriate support.

Danielle continues to work alongside researchers, healthcare professionals and other families to raise awareness and advocate for meaningful change.

Sharing her story, inspiring change

Danielle has openly shared her family's journey to help others understand the importance of genetic awareness and the impact of rare inherited conditions.

In a heartfelt interview with Lumi Health, Danielle reflects on Sonny and Airlie's lives, her family's experience and why she is determined to help other families access answers sooner. Watch the interview below.

Her story has also reached audiences across Australia. In a recent Mamamia feature, Danielle spoke about losing both her children to PPA2 deficiency and her ongoing fight for greater access to genetic testing.

Her advocacy has also connected her with families internationally, including Canadian mother Melissa Carlton, who also lost two children to the same rare condition. Their shared mission was highlighted in a moving Marie Claire Australia article, exploring their determination to improve genetic testing and support for families affected by sudden unexplained childhood deaths.

Through these conversations, Danielle continues to raise awareness and encourage families to learn more about their genetic health.

Why genetic awareness matters

Many people carry genetic changes associated with inherited conditions without knowing it. They may be completely healthy, with no symptoms or family history.

Reproductive carrier screening can help individuals and couples better understand their chances of passing certain inherited conditions on to their children, ideally before pregnancy.

While no screening test can identify every genetic condition, having access to information earlier can help families make informed decisions about their reproductive options.

Danielle's story is a powerful reminder of why awareness, education and access to genetic testing matter.

Honouring Sonny and Airlie's Legacy

Through her advocacy, Danielle continues to honour Sonny and Airlie's lives, turning her family's experience into a powerful movement for greater genetic awareness and meaningful change.

As she shared with Marie Claire:

“Their lives mattered; their diagnosis mattered.”

At Lumi Health, we are proud to have Danielle as our ambassador and grateful for the incredible work she continues to do alongside Rachael Casella and fellow advocates.

“We met Danielle following the passing of Airlie. Danielle and Leon's story is why carrier screening should be offered to all couples before trying for a baby, and why genetic testing should be considered as part of coronial investigations into unexplained deaths in young people. With most carriers having no known family history, greater awareness and access to screening are so important. Thank you, Danielle, for your advocacy.” - Kerri James

Danielle's determination to help other families find answers, access support and make informed decisions continues to create a lasting legacy for Sonny and Airlie.

Follow Danielle's journey through Our Rare Life on Instagram and sign the petition calling for genetic testing to be included in coronial investigations of unexplained deaths in young people.

If you have a story you'd like to share, we'd love to hear from you. Reach out to our team at support@lumihealth.com.au.