In this special episode of From the Heart, HeartKids CEO Sami Glastonbury swaps seats with Heart Dad, ambassador and broadcaster Simon Reeve, who steps in to ask the questions.

Simon shares the story of his son Sam, who was diagnosed with transposition of the great arteries shortly after birth, and reflects on the fear, uncertainty and hope that shaped their family’s early journey.

From there, the conversation turns to Sami’s own experience as a heart mum and the path that led her to become CEO of HeartKids. Together, they talk about what support looks like for families today, the challenges that still exist, and why greater awareness of childhood-onset heart disease matters.

They also explore the transition from heart kid to heart adult, the emotional impact of growing up with a heart condition, and the work still needed to make sure families feel supported at every stage.

What does it mean to move from children's cardiac care into the adult healthcare system, and how can young people feel confident and empowered through the process?

In this episode of From the Heart, host Rachel Knowles sits down with Nurse Dr Mary Tallon, Clinical Nurse Specialist in Cardiology at Perth Children's Hospital and a contributor to the Australian Standards of Care for Childhood-Onset Heart Disease. Together, they explore the transition to adult care, why it should begin long before a young person turns 18, and how families, healthcare teams and communities can work together to support independence and lifelong heart health.

Mary shares practical advice for young people and parents, discusses the importance of understanding your own heart story, and explains how confidence, connection and self-advocacy can make all the difference during this important life stage.

Whether you're preparing for transition yourself, supporting a young person, or simply want to better understand the journey, this conversation offers practical guidance, reassurance and a hopeful look at what comes next for young people living with childhood-onset heart disease.

In this episode, host Rachel Knowles speaks with Holly Cuthbert, a 25-year-old living with childhood-onset heart disease from Busselton in Western Australia.

Holly shares her experience growing up with a complex heart condition and undergoing four open-heart surgeries, including three during her teenage years. She reflects on the challenges of balancing school, friendships and health, the impact of medical trauma, and the importance of connection through the HeartKids community.

Now working as a social worker supporting teenagers, Holly discusses how her lived experience has shaped the way she supports others navigating their own challenges.

This special 100th episode brings Sammy and Rachel together to revisit the moments, people and insights that have defined From the Heart. They explore the power of shared stories, the evolving experiences of heart parents and heart adults, and how community connection continues to shape the podcast. A warm, open conversation that celebrates the stories that brought us here — and those still to come.

HEARTKIDS

From The Heart is brought to you by HeartKids, the only national not-for-profit solely focused on supporting and advocating for people affected by childhood-onset heart disease.

For support, information or guidance on your CoHD journey, call the HeartKids Helpline on 1800 432 785 or visit the website at https://www.heartkids.org.au

COPYRIGHT

All content on this podcast is subject to copyright and may not be reproduced, repurposed, republished, or copied, in any form, without permission.

Repurposing or republishing content from this podcast, even with credit and acknowledgement to the creators, host, and guest, does not provide an exemption to this copyright.

CREDITS
Hosts and Guests: Rachel Knowles & Sami Glastonbury
Producer: Becky Oakley

In this episode of the HeartKids Podcast, host Rachel Knowles speaks with 20-year-old Brodie and his mum, Annie, from Tasmania. Brodie has lived with childhood-onset heart disease and has undergone not one, but two heart transplants — the first during the height of COVID-19, and the second just last year.

Brodie and Annie share the early signs that something wasn’t right, the frightening dash from regional Tasmania to Melbourne for lifesaving treatment, and the long months spent away from home due to border closures and hospital restrictions. They reflect on the intense isolation of that time, the power of connection with other heart families, and the mix of courage, humour and resilience that carried them through.

Now 18 months on from his second transplant, Brodie talks about recovery, returning to everyday life, and the simple routines that help him stay well. Annie offers insight into the experience of parenting through uncertainty, the strength she discovered along the way, and the support they received from HeartKids when their world was suddenly turned upside down.

HEARTKIDS

From The Heart is brought to you by HeartKids, the only national not-for-profit solely focused on supporting and advocating for people affected by childhood-onset heart disease.

For support, information or guidance on your CoHD journey, call the HeartKids Helpline on 1800 432 785 or visit the website at https://www.heartkids.org.au

COPYRIGHT

All content on this podcast is subject to copyright and may not be reproduced, repurposed, republished, or copied, in any form, without permission.

Repurposing or republishing content from this podcast, even with credit and acknowledgement to the creators, host, and guest, does not provide an exemption to this copyright.

CREDITS
Host: Rachel Knowles
Guests: Annie and Brodie Whelan
Producer: Becky Oakley

Tanya Hall, CEO and founder of Hearts4heart and member of the World Heart Federation Board, joins us to share how lived experience can reshape care, policy and community. Diagnosed in infancy and navigating a complex journey that includes open heart surgery, arrhythmias, ablations and a pacemaker, Tanya describes the isolation that led her to start Hearts4heart in 2011 and how it has grown into a national organisation supporting, educating and empowering adults with heart conditions.

We discuss the moment her story shifted a decade of stalled advocacy in Parliament, why patient voices must be equal stakeholders in health decisions, and how collaboration across clinicians, government and community drives real change. Tanya also reflects on equity challenges across Australia and globally, the rise of patient led advocacy, and her hope for a future where no one feels alone on their heart health journey.

HEARTKIDS

From The Heart is brought to you by HeartKids, the only national not-for-profit solely focused on supporting and advocating for people affected by childhood-onset heart disease.

For support, information or guidance on your CoHD journey, call the HeartKids Helpline on 1800 432 785 or visit the website at https://www.heartkids.org.au

COPYRIGHT

All content on this podcast is subject to copyright and may not be reproduced, repurposed, republished, or copied, in any form, without permission.

Repurposing or republishing content from this podcast, even with credit and acknowledgement to the creators, host, and guest, does not provide an exemption to this copyright.

CREDITS
Host: Sami Glastonbury
Guest: Tanya Hall
Producer: Becky Oakley

In this episode, host Sami Glastonbury speaks with Mark Edmonds, Education Project Coordinator at HeartKids, about the power of co-design and education in transforming care for people living with childhood-onset heart disease.

Mark shares how his background in neurophysiology and teaching has shaped his approach to developing national education modules for healthcare professionals, ensuring care is holistic, evidence-based, and grounded in lived experience.

Together, they explore how education is helping clinicians across Australia better understand the complexities of lifelong heart conditions, strengthen communication and mental health awareness, and ultimately improve outcomes for families.

HEARTKIDS

From The Heart is brought to you by HeartKids, the only national not-for-profit solely focused on supporting and advocating for people affected by childhood-onset heart disease.

For support, information or guidance on your CoHD journey, call the HeartKids Helpline on 1800 432 785 or visit the website at https://www.heartkids.org.au

COPYRIGHT

All content on this podcast is subject to copyright and may not be reproduced, repurposed, republished, or copied, in any form, without permission.

Repurposing or republishing content from this podcast, even with credit and acknowledgement to the creators, host, and guest, does not provide an exemption to this copyright.

CREDITS
Host: Sami Glastonbury
Guest: Mark Edmonds
Producer: Becky Oakley

In this episode, host Sami is joined by Natasha D'Souza, one of our dedicated Family Support Coordinators in Western Australia. 

Drawing on her own experience as a heart parent, Tash shares how she and the WA team walk alongside families through hospital stays, unexpected admissions, and the life-changing reality of having to travel interstate for cardiac care. 

From practical tips on preparing for the journey, to the compassion of support that stretches across states and siblings at home, Tash opens up about a decade of standing with families through their hardest moments — and why she still loves this role every single day.

HEARTKIDS

From The Heart is brought to you by HeartKids, the only national not-for-profit solely focused on supporting and advocating for people affected by childhood-onset heart disease.

For support, information or guidance on your CoHD journey, call the HeartKids Helpline on 1800 432 785 or visit the website at https://www.heartkids.org.au

COPYRIGHT

All content on this podcast is subject to copyright and may not be reproduced, repurposed, republished, or copied, in any form, without permission.

Repurposing or republishing content from this podcast, even with credit and acknowledgement to the creators, host, and guest, does not provide an exemption to this copyright.

CREDITS
Host: Sami Glastonbury
Guest: Natasha D'Souza
Producer: Becky Oakley

In this episode of From The Heart, Angela Webb, our Aboriginal and Torres Strait Islander Community Engagement Manager, speaks with Maria Tass and her twin sons, Benson and Albert, from Mackay, Queensland. Born with congenital heart conditions in 2015 and later diagnosed with rheumatic heart disease, the boys went through multiple surgeries and were among the first patients at Queensland Children’s Hospital.

Maria reflects on the challenges of caring for twins with complex needs, the vital role of culture and community, and the support she received from HeartKids. Benson and Albert also share their own voices, talking about living with ongoing treatment and the strength they find in sport, family and cultural identity. Their story is one of resilience, connection and hope for other families navigating CoHD and RHD.

HEARTKIDS

From The Heart is brought to you by HeartKids, the only national not-for-profit solely focused on supporting and advocating for people affected by childhood-onset heart disease.

For support, information or guidance on your CoHD journey, call the HeartKids Helpline on 1800 432 785 or visit the website at https://www.heartkids.org.au

COPYRIGHT

All content on this podcast is subject to copyright and may not be reproduced, repurposed, republished, or copied, in any form, without permission.

Repurposing or republishing content from this podcast, even with credit and acknowledgement to the creators, host, and guest, does not provide an exemption to this copyright.

CREDITS
Host: Angela Webb
Guest: Maria, Benson and Albert Tass
Producer: Becky Oakley

In this episode of From the Heart, Jonathan Mackley shares his journey from being born with a complex heart condition and undergoing one of the earliest Fontan surgeries, to becoming a strong voice in the HeartKids community. 

Jonathan talks about growing up in the 70s and 80s, the shift from limited supports to today’s networks, and how connection with others living with congenital heart disease transformed his perspective. 

He reflects on advocacy, co-founding the Australian and New Zealand Fontan Community, and why lived experience is so vital in shaping research, healthcare, and everyday choice.

HEARTKIDS

From The Heart is brought to you by HeartKids, the only national not-for-profit solely focused on supporting and advocating for people affected by childhood-onset heart disease.

For support, information or guidance on your CoHD journey, call the HeartKids Helpline on 1800 432 785 or visit the website at https://www.heartkids.org.au

COPYRIGHT

All content on this podcast is subject to copyright and may not be reproduced, repurposed, republished, or copied, in any form, without permission.

Repurposing or republishing content from this podcast, even with credit and acknowledgement to the creators, host, and guest, does not provide an exemption to this copyright.