Airlie's story
Danielle and Leon Green’s story is one shaped by love, loss, and a search for answers.
In 2021, they welcomed their first child, Sonny — their bright and happy “sunshine boy.” At just nine months old, Sonny became unwell with mild gastro symptoms. While being assessed in hospital, he went into cardiac arrest and tragically could not be saved.
His death was described as a “misfortunate accident,” leaving his family devastated and without answers.
While still grieving, Danielle and Leon fell pregnant again. In November 2022, they welcomed their daughter Airlie — their sassy, cheeky “heart healer” who brought light back into their lives. But at five months old, Airlie became unwell with similar symptoms. She was rushed to hospital, where she also went into cardiac arrest. This time, she was resuscitated, and while in ICU, genetic testing revealed an extremely rare condition: PPA2.
For the first time, the family had an explanation, but it came with a new reality. Very little was known about the condition, with most cases identified only after death. Airlie became one of the only known living cases in Australia. Her life became carefully managed, with ongoing hospital care, an implanted defibrillator, and strict precautions to protect her from illness.
Despite everything, Airlie remained full of personality - cheeky, joyful, and deeply loved. Her parents connected with other families around the world, building a small community around a condition that so few had ever heard of.
In May 2024, at 18 months old, Airlie became unwell again. Despite every effort from her medical team, she suffered another cardiac arrest and passed away.
Following Airlie’s diagnosis, testing confirmed that Sonny had also carried the same PPA2 mutation. The answers Danielle and Leon had searched for after Sonny’s death were there. But they came too late. If genetic testing had been conducted earlier, their family may have known the risks and been able to protect Airlie.
Through unimaginable loss, Danielle and Leon are now advocating for routine genetic testing following sudden unexplained deaths, so that other families can receive answers — and so future lives can be protected.
- Written by Danielle and Leon Green, Sonny and Airlie's parents