CONTENT WARNING: This episode discusses child loss. Please know help is available contact Lifeline on 13 11 14 for 24/7 crisis support, or Beyond Blue on 1300 224 636. 

Danielle Lilley and Melissa Carlton know what it means to have a life changed in an instant. Both are mothers who lost children suddenly, both were left searching for answers, and both eventually discovered that a rare genetic condition called PPA2 was at the centre of their stories. 

Marie Claire Australia Editor Georgie McCourt brings Danielle and Melissa together for an incredibly honest conversation about grief, motherhood, unanswered questions and what happens when the answers come too late. 

Danielle lost her son Sunny at nine months old after what appeared to be a mild illness. Years later, when her daughter Airlie became critically ill and suffered a cardiac arrest, doctors finally discovered that Danielle and her husband were carriers of PPA2 and that both children had inherited the condition. The diagnosis finally explained what had happened to Sunny, but it came only after another child had been put at risk.  

Melissa lost her daughter Abi at nine years old after a sudden cardiac arrest. Then, on Christmas Day 2025, her five-year-old daughter Molly also died after becoming critically ill. It was only after Molly's death, following months of testing, that Melissa and her husband Tom discovered they were carriers of PPA2 and that Abi may have had the same condition. 

They speak candidly about anger, particularly the anger that came with discovering that genetic testing might have provided answers earlier. For Danielle, that realisation became the catalyst for The Coroners Project and her advocacy for better genetic testing, referral pathways and support following unexplained childhood deaths. Melissa is also campaigning for greater access to genetic testing after discovering that her family could potentially have known about PPA2 earlier. 

Melissa also opens up about sharing grief publicly, the support she found online after Abi's death, and the devastating criticism and abuse she experienced after Molly's death. She talks about why she eventually spoke about the online bullying and how she and Tom created Hello Angel, an app designed to support grieving families and help people maintain a continuing bond with someone they have lost. 

And beneath all of it is a conversation about their children who Sunny, Airlie, Abi and Molly were, the memories they have left behind, and what it means to continue being a parent after losing a child. 

Read more on Marie Claire: Two Mothers Lived Every Parent’s Worst Nightmare – Twice. Now They Want Answers

Follow Melissa @melissamaecarlton Follow Danielle @our_rarelife

This episode covers: 
Danielle and Melissa's experiences of sudden child loss 
The stories of Sunny, Airlie, Abi and Molly 
PPA2 and rare genetic conditions 
Sudden unexplained death in children 
The search for answers after an unexplained death 
Genetic testing and why earlier answers matter 
The emotional impact of discovering a diagnosis after loss 
Grief and parenting surviving children 
Living with unanswered questions 
Anger, advocacy and the healthcare system 
The Coroners Project 
Sharing grief on social media 
Creating Hello Angel 
Continuing bonds and keeping memories alive 
Turning grief into advocacy 
Why community matters after child loss 
What Danielle and Melissa want other families to know 

If this conversation raises issues for you, support is available.In Australia, contact Lifeline on 13 11 14 for 24/7 crisis support, or Beyond Blue on 1300 224 636. 

If you have experienced loss from SUDC, you can have your say in changing the coronial process with Melanie Andrew-Manning’s survey here.

 

Stay up to date with Marie Claire Australia on Instagram @marieclaireau 

🎧 Listen to You're Gonna Want to Hear This and follow us on Apple Podcasts or Spotify   

👀 Watch and subscribe to You're Gonna Want to Hear This on YouTube 📺 for full episodes and clips. https://www.youtube.com/marieclaire 

Credits:    

Host Georgie McCourt    

Edited by Helen Smith  

Head of Vodcasting Rachel Fountain  

With thanks to our amazing team at Marie Claire   

You're Gonna Want to Hear This is a production of Marie Claire and Are Media https://www.marieclaire.com.au/life/youre-gonna-want-to-hear-this-podcast/

CONTENT WARNING: This episode discusses child loss. Please know help is available contact Lifeline on 13 11 14 for 24/7 crisis support, or Beyond Blue on 1300 224 636.&nbsp;
Danielle Lilley and Melissa Carlton know what it means to have a life changed in an instant. Both are mothers who lost children suddenly, both were left searching for answers, and both eventually discovered that a rare genetic condition called PPA2 was at the centre of their stories.&nbsp;
Marie Claire Australia Editor Georgie McCourt brings Danielle and Melissa together for an incredibly honest conversation about grief, motherhood, unanswered questions and what happens when the answers come too late.&nbsp;
Danielle lost her son Sunny at nine months old after what appeared to be a mild illness. Years later, when her daughter Airlie became critically ill and suffered a cardiac arrest, doctors finally discovered that Danielle and her husband were carriers of PPA2 and that both children had inherited the condition. The diagnosis finally explained what had happened to Sunny, but it came only after another child had been put at risk.&nbsp;&nbsp;
Melissa lost her daughter Abi at nine years old after a sudden cardiac arrest. Then, on Christmas Day 2025, her five-year-old daughter Molly also died after becoming critically ill. It was only after Molly's death, following months of testing, that Melissa and her husband Tom discovered they were carriers of PPA2 and that Abi may have had the same condition.&nbsp;
They speak candidly about anger, particularly the anger that came with discovering that genetic testing might have provided answers earlier. For Danielle, that realisation became the catalyst for The Coroners Project and her advocacy for better genetic testing, referral pathways and support following unexplained childhood deaths. Melissa is also campaigning for greater access to genetic testing after discovering that her family could potentially have known about PPA2 earlier.&nbsp;
Melissa also opens up about sharing grief publicly, the support she found online after Abi's death, and the devastating criticism and abuse she experienced after Molly's death. She talks about why she eventually spoke about the online bullying and how she and Tom created Hello Angel, an app designed to support grieving families and help people maintain a continuing bond with someone they have lost.&nbsp;
And beneath all of it is a conversation about their children who Sunny, Airlie, Abi and Molly were, the memories they have left behind, and what it means to continue being a parent after losing a child.&nbsp;
Read more on Marie Claire: <a href="https://www.marieclaire.com.au/news/advocacy/sudc/">Two Mothers Lived Every Parent&rsquo;s Worst Nightmare &ndash; Twice. Now They Want Answers</a>
Follow Melissa <a href="https://www.instagram.com/melissamaecarlton/">@melissamaecarlton</a> Follow Danielle&nbsp;<a href="https://www.instagram.com/our_rarelife/" data-ml-dynamic="true" data-ml-dynamic-type="sl">@our_rarelife</a>
This episode covers:&nbsp;
<ul>
<li>Danielle and Melissa's experiences of sudden child loss&nbsp;</li>
<li>The stories of Sunny, Airlie, Abi and Molly&nbsp;</li>
<li>PPA2 and rare genetic conditions&nbsp;</li>
<li>Sudden unexplained death in children&nbsp;</li>
<li>The search for answers after an unexplained death&nbsp;</li>
<li>Genetic testing and why earlier answers matter&nbsp;</li>
<li>The emotional impact of discovering a diagnosis after loss&nbsp;</li>
<li>Grief and parenting surviving children&nbsp;</li>
<li>Living with unanswered questions&nbsp;</li>
<li>Anger, advocacy and the healthcare system&nbsp;</li>
<li>The Coroners Project&nbsp;</li>
<li>Sharing grief on social media&nbsp;</li>
<li>Creating Hello Angel&nbsp;</li>
<li>Continuing bonds and keeping memories alive&nbsp;</li>
<li>Turning grief into advocacy&nbsp;</li>
<li>Why community matters after child loss&nbsp;</li>
<li>What Danielle and Melissa want other families to know&nbsp;</li>
</ul>
If this conversation raises issues for you, support is available. In Australia, contact Lifeline on 13 11 14 for 24/7 crisis support, or Beyond Blue on 1300 224 636.&nbsp;
If you have experienced loss from SUDC, you can have your say in changing the coronial process with Melanie Andrew-Manning&rsquo;s survey&nbsp;<a href="https://redcap.link/SIDSandSUDCparentsurvey">here</a>.
&nbsp;
Stay up to date with Marie Claire Australia on&nbsp;<a href="https://www.instagram.com/marieclaireau">Instagram</a>&nbsp;@marieclaireau&nbsp;
🎧 Listen to&nbsp;You're&nbsp;Gonna&nbsp;Want to Hear This and follow us on&nbsp;<a href="https://podcasts.apple.com/au/podcast/youre-gonna-want-to-hear-this/id1849312864">Apple Podcasts</a>&nbsp;or&nbsp;<a href="https://open.spotify.com/show/2Vsxq2nZIMJLnywOXfuxqZ?si=bb7ec5eac4184752">Spotify</a>&nbsp;&nbsp;&nbsp;
👀 Watch and subscribe to You're&nbsp;Gonna&nbsp;Want to Hear This on&nbsp;<a href="https://www.youtube.com/marieclaire">YouTube</a>&nbsp;📺 for full episodes and clips.&nbsp;<a href="https://www.youtube.com/marieclaire">https://www.youtube.com/marieclaire</a>&nbsp;
Credits:&nbsp;&nbsp;&nbsp;&nbsp;
Host&nbsp;Georgie McCourt&nbsp;&nbsp;&nbsp;&nbsp;
Edited by&nbsp;Helen Smith&nbsp;&nbsp;
Head of Vodcasting Rachel Fountain&nbsp;&nbsp;
With thanks to our amazing team at Marie Claire&nbsp;&nbsp;&nbsp;
<a href="https://www.marieclaire.com.au/life/youre-gonna-want-to-hear-this-podcast/">You're&nbsp;Gonna Want to Hear This</a>&nbsp;is a production of Marie Claire and Are Media&nbsp;<a href="https://www.marieclaire.com.au/life/youre-gonna-want-to-hear-this-podcast/">https://www.marieclaire.com.au/life/youre-gonna-want-to-hear-this-podcast/</a>

Who’s on your celebrity fantasy dinner party list? Marie Claire have got access to the biggest celebrities and fascinating favourite people you love.  With unique pairings, the type of conversations where fun and frankness is always in style. Trust us…you’re gonna want to hear this! 

Who&rsquo;s on your celebrity fantasy dinner party list? Marie Claire have got access to the biggest celebrities and fascinating favourite people you love. &nbsp;With unique pairings, the type of conversations where fun and frankness is always in style. Trust us&hellip;you&rsquo;re gonna want to hear this!&nbsp;

You’re Gonna Want To Hear This

Danielle Lilley and Melissa Carlton have both experienced the unimaginable: losing a child suddenly, without knowing why. After both families discovered they were affected by the rare genetic condition PPA2, they began asking difficult questions about genetic testing, sudden unexplained deaths in children and whether earlier answers could have changed their stories. Now, they are turning their grief into advocacy, determined to make sure other families have access to the answers and support they were denied.

Two Mothers Lost Their Children. Now They're Fighting for Change

https://api.omny.fm/orgs/fa326977-3de5-4283-9b8b-af3500c58607/clips/704a8274-45c6-4672-8071-b4e70185cb9a/transcript