Airlie’s story – living with PPA2

The story of Airlie

Our 15 month old daughter Airlie was diagnosed with the rare condition of PPA2 (sudden cardiac death in infancy) at the age of 5 months following a cardiac arrest from viral gastro (virus triggers the condition amongst other things)

We sadly lost our son, Airlie’s older brother Sonny to this condition (unknown to us at the time) at 9 months of age in 2021.

Since our diagnosis Airlie has had ICD surgery and has a team of specialists overseeing her care as we try to live life as normal as possible, Airlie has a big personality and is a very cheeky and determined little girl that brings us so much joy

We are the only known case living in Australia and have since found 10 others around the world living with this rare condition that can affect your heart, neurologically and a range of other symptoms. Little is known about PPA2 as most children die in infancy and are diagnosed post mortem following a family history. We hope to spread awareness of PPA2 and hopefully more research into this condition can provide us with valuable information