From The Heart: The HeartKids Podcast

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.HEARTKIDSFrom 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.auCOPYRIGHTAll 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.CREDITSHosts and Guests: Rachel Knowles & Sami GlastonburyProducer: 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.HEARTKIDSFrom 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.auCOPYRIGHTAll 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.CREDITSHost: Rachel KnowlesGuests: Annie and Brodie WhelanProducer: 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.HEARTKIDSFrom 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.auCOPYRIGHTAll 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.CREDITSHost: Sami GlastonburyGuest: Tanya HallProducer: 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.HEARTKIDSFrom 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.auCOPYRIGHTAll 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.CREDITSHost: Sami GlastonburyGuest: Mark EdmondsProducer: 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.HEARTKIDSFrom 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.auCOPYRIGHTAll 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.CREDITSHost: Sami GlastonburyGuest: Natasha D'SouzaProducer: 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.HEARTKIDSFrom 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.auCOPYRIGHTAll 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.CREDITSHost: Angela WebbGuest: Maria, Benson and Albert TassProducer: 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.HEARTKIDSFrom 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.auCOPYRIGHTAll 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.

In this episode of From the Heart, host Sami Glastonbury speaks with world champion athlete and health ambassador Hugo Taheny and his mum, Louise. Hugo is a Heart Kid living with Down syndrome, along with vision and hearing impairments. His journey has been shaped by resilience, family, and community.Hugo shares how sport became his passion, earning him the nickname “Rockstar” and leading him to represent Australia on the world stage. Louise reflects on Hugo’s early health challenges, the strength of rural community support, and the importance of inclusion in both healthcare and sport.Together, they discuss the barriers that still exist, their advocacy for more inclusive pathways, and Hugo’s powerful message: use your voice, hold your head high, and help create a world where everyone belongs.HEARTKIDSFrom 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.auCOPYRIGHTAll 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.

In this episode of From the Heart, host Sami Glastonbury sits down with Dr Stephanie Perrier, Paediatric and Congenital Cardiac Surgeon at the Royal Children's Hospital Melbourne. From her early training in France to performing life-changing surgeries in Australia, Stephanie shares her path into cardiac surgery and why she still sees the heart as magical.They explore what a typical surgery day looks like, who’s in the room during an operation, and what families can expect before, during and after their child’s surgery. Stephanie also shares insights into fast-track recovery, the impact of small changes in care, and the potential of data to improve future outcomes.This is a warm, honest and informative conversation for anyone navigating childhood-onset heart disease or wanting to understand what happens behind the theatre doors.HEARTKIDSFrom 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.auCOPYRIGHTAll 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.

In this episode of From The Heart Sami chats with Emily Hayes, a speech pathologist and feeding specialist who works closely with babies and young children, including those who’ve had surgery or spent time in intensive care.  Listen as Sami and Emily discuss nasogastric (NG) tubes, feeding difficulties, speech delays as well as what to expect during recovery, how to support your child at home, and when it might be time to seek extra help.Emily HayesEmily Hayes is the founder of SA-based Hayes Speech Pathology. Established in 2015, Hayes Speech Pathology has a focus on paediatric feeding, using practical methods to support children and empower their families to overcome eating barriers.hayessp.com.auHEARTKIDSFrom 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.auCOPYRIGHTAll 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.CREDITSHost: Sami GlastonburyGuests: Emily HayesProducer: Becky Oakley

In this episode of 'From The Heart', our host Rachael chats to Annabel Turner - a young heart adult who has tricuspid artresia. Listen as Rachael and Annabel chat about having a heart condition has not stopped Annabel from living a full, rich and exciting life. HEARTKIDSFrom 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.auCOPYRIGHTAll 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.CREDITSHost: Rachael KnowlesGuests: Annabel TurnerProducer: Becky Oakley

In this episode of 'From The Heart', our host Rachael chats to Stacey Micallef - a sexologist and relationship & trauma counsellor based in Geelong, Victoria. Listen as Rachael and Stacey chat about how CoHD can impact sexual health and relationships, and the strategies you can employ to build healthy, fulfilling sexual relationships.HEARTKIDSFrom 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.auStacey MicallefFrom her practice, Every Body Sexology, Stacey Micallef works with those seeking healthy connections with self and/or others. Stacey specialises in resolving painful sex and other pelvic pain issues, resolving sexual, birth and medical distress/trauma and working with the LGBTIQASB+ community. COPYRIGHTAll 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.CREDITSHost: Rachael KnowlesGuests: Stacey MicallefProducer: Becky Oakley

In this episode of 'From The Heart', our host Rachael chats to clinical psychologist Carlye Crank about mental health, medical trauma and the unique ways in which physical health can impact your mental health.HEARTKIDSFrom 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.auCarlye CrankCarlye is the principle practitioner and director of Rise Psychology. She is a registered Clinical Psychologist who specialises in assessment and treatment of a broad range of mental health conditions. She treats a broad range of conditions including depression, anxiety, trauma, attachment and relationship difficulties and the psychological impact of chronic health conditions. COPYRIGHTAll 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.CREDITSHost: Rachael KnowlesGuests: Carlye CrankProducer: Becky Oakley

In this special episode for Reconciliation Week, Angela Webb, HeartKids’ Aboriginal and Torres Strait Islander Community Engagement Manager, has a yarn with Tanika Parker, RHD Nurse Navigator, and Genavie Tabuai, Health Worker Coordinator for Maternal, Child and Family Health Programs, both from Torres and Cape Hospital and Health Service.Tanika and Genavie speak about the realities of delivering care across remote communities in Far North Queensland, with a strong focus on preventing and managing rheumatic heart disease (RHD). They discuss the importance of culturally safe care, early intervention, and empowering health workers to lead conversations in their own communities.They share what’s working, like one-on-one health promotion, outreach programs, and practical support for women who need to travel off Country to access care. They also speak openly about the gaps that still exist, including limited access to dental care under travel policies, and the need for better coordination across services.This episode offers an honest look at the day-to-day work of responding to RHD and other health issues in community. It shows how real change comes from listening, working alongside mob, and making space for community-led solutions.HEARTKIDSFrom 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.auCOPYRIGHTAll 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.CREDITSHost: Angela WebbGuests: Tanika Parker and Genavie TabuaiProducer: Becky Oakley

In this episode of "From the Heart," join our host, Sami, for a conversation with Mitch McGovern.Mitch is a football player with Carlton, and a HeartKids Ambassador. Sami and Mitch chat about Mitch's connection with CoHD, and how his trajectory changed after his best friend, Logan, passed away due to complications with his condition.HEARTKIDSFrom 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.auCOPYRIGHTAll 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.CREDITSHost: Sami GlastonburyGuest: Mitch McGovernProducer: Melissa Clarke

In this episode of "From the Heart," join our host, Sami, for a conversation with Dr Shannon Schedlich.Shannon joins the podcast this episode, to chat with Sami about strengthening  family units, and promoting nuanced support for all members. Shannon shares critical insights in acknowledging emotions, allowing space and an opportunity for siblings to share time with parents, and the significance of a siblings' understanding of their brother or sister's disability or chronic health condition.HEARTKIDSFrom 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.auSIBLINGS AUSTRALIASiblings Australia is committed to improving the support available for siblings of children and adults with chronic conditions including disability, chronic illness and mental health issues.Access more information on their website hereCOPYRIGHTAll 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.CREDITSHost: Sami GlastonburyGuest: Dr Shannon SchedlichProducer: Melissa Clarke

In this episode of "From the Heart," join our host, Sami, for a conversation with Curtis McGrath.Curtis is an Australian Paralympic gold medalist in paracanoe who lost both his legs while serving as a combat engineer in Afghanistan.  His extraordinary evolution from soldier to Paralympic icon has inspired millions worldwide, with his journey taking on new meaning in 2024 when he and his wife Rachel welcomed their son Monty, born with transposition of the great arteries (TGA), adding another chapter of resilience to their family's remarkable story. Sami and Curtis chat through the McGrath family journey with CoHD, while employing incredible determination in the run up to Curtis' participation in the Paris Paralympics.HEARTKIDSFrom 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.auCOPYRIGHTAll 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.CREDITSHost: Sami GlastonburyGuest: Curtis McGrath Producer: Melissa Clarke

In this episode of "From the Heart," join our host, Sami, for a conversation with Mahan Ahmadiram, an adult navigating her life with CHD, with CH-FIT, community, and exceptional strength.Sami and Mahan discuss the significant journey Mahan and her family have experienced across several countries, and the many surgeries and supports that have bolstered her resolve and strength to this day.Mahan has recently volunteered at a HeartKids camp, and is actively involved in the CH-FIT program offering critical exercise support to those with CoHD.HEARTKIDSFrom 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.auCREDITSHost: Sami GlastonburyGuest: Mahan AhmadiramProducer:  Melissa Clarke

In this episode of "From the Heart," join our host, Sami, for a conversation with Cindy Hutchison.Cindy and Sami chat about Cindy's extraordinary experiences with supporting her daughter Maddi, and grandson York, through their exceptionally challenging heart journey.Cindy shares incredible insight as to support and routines she offered, and the ways in which the whole family rallied around their newest member.Content Warning: This episode contains some discussion regarding termination for medical reasons. If you choose to listen, please listen in a safe space and remember you can pause if you need to. HEARTKIDSFrom 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.auTHROUGH THE UNEXPECTEDIf you have received an unexpected prenatal diagnosis, or are seeking support relating to TFMR experiences, the below links may offer some resources or support groups:Through the UnexpectedPink ElephantsRed Nose Grief and LossCREDITSHost: Sami GlastonburyGuest: Cindy HutchisonProducer: Melissa Clarke

Welcome to From the Heart: The HeartKids Podcast, Season 4.In this episode of "From the Heart," join our host, Sami, for a conversation with Chloe Peck, a young adult who is a sibling to a heart teen.Join Sami and Chloe as they discuss the complexities of a heart journey, for siblings and extended family members, and the extraordinary efforts and routines Chloe's family implemented to bolster their whole support network.HEARTKIDSFrom 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.auCREDITSHost: Sami GlastonburyGuest: Chloe PeckProducer:  Melissa Clarke

Welcome to From the Heart: 2024 Wrapped!As we have closed off 2024 and into 2025, we're bringing you some fan favourite episodes of From the Heart, season 3.Here is Encore #5 - Erin FergusonIn this episode of From the Heart, Tahnee Jash is joined by Erin Ferguson, a dedicated paediatric Rheumatic Heart Disease (RHD) clinical nurse consultant from the Happy Heart Clinic in Far North Queensland. Erin discusses her team's efforts to improve healthcare experiences for young patients with RHD, focusing on their practical and supportive approaches. Learn about the strategies that are making a difference in providing consistent and equitable care to both RHD and CoHD patients across Australia.HEARTKIDSFrom 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.auCREDITSHost: Tahnee JashGuest: Erin FergusonProducer:  Becky Oakley

Welcome to From the Heart: 2024 Wrapped!As we have closed off 2024 and looking into 2025, we're bringing you some fan favourite episodes of From the Heart, season 3.Here is Encore #4 - Danielle GreenDanielle is a mother to two children, Sonny and Airlie, who have both passed away due to a rare genetic condition known only as PPA2.Sami and Danielle chat about Danielle and her husband Leon's journey with this extremely rare condition, advocating for genetic testing and counselling, and the importance of family and community during the most difficult of times.A content warning: This episode will touch on grief, and bereavement that some may find challenging.If you choose to listen, please listen in a safe space and remember you can pause if you need to. HEARTKIDSFrom 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.auOUR RARE LIFEDanielle and Leon run Our Rare Life, a group to raise awareness and platform rare genetic conditions.Head to their instagram page here, and be sure to check their link in bio for more resources and information about rare conditions.CREDITSHost: Sami GlastonburyGuest: Danielle GreenProducer:  Melissa Clarke

Welcome to From the Heart: 2024 Wrapped!As we close off the end of this year, we're bringing you some fan favourite episodes of From the Heart, season 3.Here is Encore #3 - Amber Adamson: Ask a NurseIn this episode Rachael chats with Amber Adamson, a dedicated Clinical Nurse Consultant at Prince Charles Hospital, who specialises in Adult Congenital Heart Disease.Before the episode was recorded, we put out a call on social media for young people and adults to submit questions to be answered on air, and you responded with thoughtful topics and queries about navigating life and healthcare with a heart condition. In this episode Amber is here to help, specifically addressing the concerns and questions of young people and adults, sharing her expertise, insights, and advice for managing your healthcare with confidence and independence.HEARTKIDSFrom 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.auCREDITSHost: Rachael KnowlesGuest: Amber AdamsonProducer:  Becky Oakley

Welcome to From the Heart: 2024 Wrapped!As we close off the end of this year, we're bringing you some fan favourite episodes of From the Heart, season 3.Here is Encore #2 - Kate Strickland, Child Life Therapist.Kate is a Child Life Therapist, who works in the community with children - one of the first Child Life Therapists to work outside of a hospital framework.Sami and Kate chat about how to prepare a child for surgery, what to expect, and how to process the event after families return home. Kate offers fantastic tips, resources, and information to anyone bolstering support around their HeartKid throughout their childhood. HEARTKIDSFrom 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.auHEALING HEARTS BEYONDKate owns and operates at Healing Hearts Beyond in Victoria.Visit her website here for more information, resources, and guidance.CREDITSHost: Sami GlastonburyGuest: Kate StricklandProducer:  Melissa Clarke

Welcome to From the Heart: 2024 Wrapped!As we close off the end of this year, we're bringing you some fan favourite episodes of From the Heart, season 3.Here is Encore #1 - Elijah's StoryElijah, a proud Kamilaroi/Wiradjuri man, shares his remarkable journey living with childhood-onset heart disease (CoHD) with our host, Tahnee Jash.Elijah works as an Indigenous Liaison Officer for the Department of Infrastructure in Meanjin. Diagnosed with pulmonary atresia with VSD at birth, Elijah has faced numerous challenges and undergone several surgeries, including a significant operation two years ago to replace three leaking valves.This episode showcases resilience, the importance of self-care and the power of family support. HEARTKIDSFrom 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.auCREDITSHost: Tahnee JashGuest: Elijah HillProducer: Becky Oakley

In this episode of "From the Heart," join our host, Sami, for a catch-up conversation with podcast producer,  Mel.Mel and Sami chat about Sami's current pathway to seeking a diagnosis for her daughter, as well as updates from all the incredible events and outcomes from HeartKids for the year.HEARTKIDSFrom 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.auCREDITSHost: Sami GlastonburyProducer:  Melissa Clarke

In this episode of "From the Heart," join our host, Sami, for a conversation with Amy Heafield.Many families who have spent time at the Royal Children's Hospital in Melbourne will have crossed paths with Amy; Amy is a Support Coordinator with HeartKids, and a parent to a heart teen.Amy and Sami chat about what HeartKids Support looks like, the joys of supporting teens on teen camp, and considerations in supporting a heart kid, as they transition through childhood, to their teen years, and beyond. HEARTKIDSFrom 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.auCREDITSHost: Sami GlastonburyGuest: Amy HeafieldProducer:  Melissa Clarke 

In this episode of "From the Heart," join our host, Rachael, for a conversation with Jaden Dixon.Jaden is a 29-year-old from Brisbane who was born with Hypoplastic Left Heart Syndrome (HLHS). Jaden studied social work and now works for Queensland Health. Listen in as Rachael and Jaden discuss their heart journeys, Jaden's involvement with HeartKids, the importance of connecting with the peer community, finding your people, and living life with a heart condition! 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 CREDITS Host: Rachael Knowles Guest: Jaden Dixon Producers: Becky Oakley, Melissa Clarke 

In this episode of "From the Heart," join our host, Sami, for a conversation with Wes McDougall.Wes is a heart adult, who has a stunning career as a racing engineer – now working with Supercheap Auto as chief engineer, as well as an instructional coach for his own business, the Complete Race Driver.Wes and Sami connect about his experiences growing up as a heart kid, surgery as an adult, and pursuing an exciting career. 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.auTHE COMPLETE RACE DRIVER@the_complete_race_driverHead to Wes' site, or instagram page to learn more about racing engineering! CREDITS Host: Sami Glastonbury Guest: Wes McDougall Producers:  Melissa Clarke 

In this episode of "From the Heart," join our host, Rachael, for a conversation with Audrey Keillor.Audrey is a 19-year-old heart adult, who was born with Tetralogy of Fallot. Audrey and Rachael connect over their experiences as young adults with CHD, transitioning to adult care, and the importance of community and connecting with peers.HEARTKIDSFrom 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.auCREDITSHost: Rachael KnowlesGuest: Audrey KeillorProducers:  Becky Oakley, Melissa Clarke

In this episode of "From the Heart," join our host, Sami, for a conversation with Danielle Green. Danielle is a mother to two children, Sonny and Airlie, who have both passed away due to a rare genetic condition known only as PPA2. Sami and Danielle chat about Danielle and her husband Leon's journey with this extremely rare condition, advocating for genetic testing and counselling, and the importance of family and community during the most difficult of times.A content warning: This episode will touch on grief, and bereavement that some may find challenging. If you choose to listen, please listen in a safe space and remember you can pause if you need to. HEARTKIDSFrom 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.auOUR RARE LIFEDanielle and Leon run Our Rare Life, a group to raise awareness and platform rare genetic conditions. Head to their instagram page here, and be sure to check their link in bio for more resources and information about rare conditions.CREDITSHost: Sami GlastonburyGuest: Danielle GreenProducer:  Melissa Clarke

In this episode of "From the Heart," join our host, Sami, for a conversation with Kate Strickland. Kate is a Child Life Therapist, who works in the community with children - one of the first Child Life Therapists to work outside of a hospital framework.Sami and Kate chat about how to prepare a child for surgery, what to expect, and how to process the event after families return home. Kate offers fantastic tips, resources, and information to anyone bolstering support around their HeartKid throughout their childhood. HEARTKIDSFrom 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.auHEALING HEARTS BEYONDKate owns and operates at Healing Hearts Beyond in Victoria.At the time of this episode being published, Kate is offering support sessions around Navigating and Supporting Your Infant's Medical Journey that listeners are able to register for through this link: here CREDITSHost: Sami GlastonburyGuest: Kate StricklandProducer:  Melissa Clarke

In this episode of From the Heart, host Rachael chats with Emma Psaros, a 25-year-old who has grown up with congenital heart disease (CHD). Emma shares her journey of managing her heart condition while leading a balanced and full life.Emma discusses her transition from paediatric to adult care, the importance of open communication with healthcare professionals, and the support she receives from family and friends. She highlights her strategies for managing mental health, including therapy and having a strong support system.Emma also talks about her love for Pilates and how she adapts her fitness routine to suit her needs. She offers insights on navigating the workplace with a heart condition and the importance of being upfront with employers about her health.The conversation touches on family planning with a heart condition, emphasising the need for being proactive and informed.Tune in for an inspiring discussion that provides valuable insights for those living with CHD or supporting someone who does.Disclaimer: This podcast deals with some heavy topics. If you or someone you love needs support, the HeartKids Helpline offers advice and guidance for those impacted by childhood heart disease. Call 1804 32785 or visit heartkids.org.au for more information. The content of this podcast is not a substitute for professional medical advice. Always consult your healthcare provider for matters affecting your health or your family's health.

In this episode of From the Heart, Rachael sits down with Laura Achilles, a heart adult living with congenital heart disease (CHD). Laura, an actor in her 30s, shares her journey of growing up with CHD, moving from the UK to Australia, and navigating a new healthcare system on her own. She opens up about the challenges and triumphs of managing her mental health, dealing with grief after losing a friend, and undergoing significant surgery without her family nearby.Laura also discusses her short film "Wild Heart," reflecting on her experiences and preparing to share her story with the world. This rich conversation explores the complexities of adult life with CHD, offering insights and inspiration for anyone facing similar challenges.Join us for an insightful and emotional episode that highlights resilience, personal growth, and the power of storytelling.

Join our host Rachael Knowles as she chats with Jeremy Richardson, an adventurous adult in his 30s living with truncus arteriosus. Jeremy leads an active life filled with travel, a passion for the snow fields, and has a family history connected to the origins of HeartKids.Tune in to hear about Jeremy's journey from growing up in South Australia to moving overseas to pursue a videography career, filming snowboarding in Canada! He shares his experiences with multiple heart surgeries, the importance of mental health, and the pivotal role his parents played in establishing HeartKids SA.Hear how Jeremy navigates life with a congenital heart condition and his invaluable advice for other heart adults. Whether you're a heart kid, a parent, or just looking for some inspiration, Jeremy's story is a testament to living life to the fullest, no matter the challenges.Don't miss this conversation packed with insights, encouragement, and a few laughs along the way.

In this episode of From the Heart, Elijah, a proud Kamilaroi/Wiradjuri man, shares his remarkable journey living with childhood-onset heart disease (CoHD) with our host, Tahnee Jash. Elijah, now 24, works as an Indigenous Liaison Officer for the Department of Infrastructure in Meanjin (Brisbane). Diagnosed with pulmonary atresia with VSD at birth, Elijah has faced numerous challenges and undergone several surgeries, including a significant operation two years ago to replace three leaking valves.Join us as Elijah discusses the physical and emotional aspects of growing up with a heart condition, his experiences transitioning from pediatric to adult healthcare, and the critical support systems that helped him along the way. He also shares his unique perspective on health, his strong connection to his Aboriginal heritage, and his aspirations to be a leader and advocate for Aboriginal people.This episode showcases resilience, the importance of self-care and the power of family support.

In this episode of From the Heart, Tahnee Jash is joined by Erin Ferguson, a dedicated paediatric Rheumatic Heart Disease (RHD) clinical nurse consultant from the Happy Heart Clinic in Far North Queensland. Erin discusses her team's efforts to improve healthcare experiences for young patients with RHD, focusing on their practical and supportive approaches. Learn about the strategies that are making a difference in providing consistent and equitable care to both RHD and CoHD patients across Australia.

In this episode, Rachael chats to Sarah Purdom, a wonderful heart adult who is not only navigating life with a heart condition (Transposition of the Great Arteries (DTGA) and pulmonary stenosis) but is also excelling in her academic and personal pursuits. Sarah is currently in her Honours year in Geology at the University of Tasmania, where she has been exploring the origins of gold within granite formations (wow)!Beyond her academic achievements, Sarah manages part-time work while exploring in her passions for science fiction, outdoor activities, and video games. In today's episode, Sarah shares her heart journey story, providing a unique insight into how she manages her condition and wellbeing during this very busy time in her life!CREDITSHost: Rachael KnowlesGuest: Sarah PurdomProducer:  Becky OakleyHEARTKIDSFrom 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

In this episode, meet CJ , a 17-year-old from Melbourne, Victoria, who shares his experiences of growing up with bicuspid aortic valve. Tune in to hear CJ's story, how he managed his surgeries, and finds positivity through art and support through friends and community.CREDITSHost: Rachael KnowlesGuest: CJ GagliardiProducer:  Becky OakleyHEARTKIDSFrom 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

Welcome to a very special episode of the HeartKids From The Heart. n this episode Rachael chats with Amber Adamson, a dedicated Clinical Nurse Consultant at Prince Charles Hospital, who specialises in Adult Congenital Heart Disease. Before the episode was recorded, we put out a call on social media for young people and adults to submit questions to be answered on air, and you responded with thoughtful topics and queries about navigating life and healthcare with a heart condition. So, in this episode Amber is here to help, specifically addressing the concerns and questions of young people and adults, sharing her expertise, insights, and advice for managing your healthcare with confidence and independence. HEARTKIDSFrom 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.auCREDITSHost: Rachael KnowlesGuest: Amber AdamsonProducer:  Becky Oakley

In this episode of "From the Heart," join our host, Sami, for a conversation with Matt Tognini. Matt is the father of a heart kid, Alessandra, who was born with a complex congenital heart condition.Sami and Matt chat about the impacts of flying across the country for heart surgery, the parent perspective of the process of transition from paediatric care to adult care, and supporting his heart kid adult as she prepares for upcoming surgery.HEARTKIDSFrom 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.auCREDITSHost: Sami GlastonburyGuest: Matt TogniniProducer:  Melissa Clarke

In this episode of "From the Heart," join our host, Sami, for a conversation with Missing School CEO Megan Gilmour.Sami and Megan chat about the impact of periods of absence from school, for those with critical health concerns. Megan takes us through initiatives that Missing School can put in place, or connections to additional supports, that assist kids who are experiencing loneliness, and gaps in learning while away from the classroom.HEARTKIDSFrom 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.auMISSING SCHOOL1300 237 234Children should be seen and heard.Read more about Missing School and their initiatives at their site https://missingschool.org.au/CREDITSHost: Sami GlastonburyGuest: Megan GilmourProducer:  Melissa Clarke

In this episode of "From the Heart," join our host, Sami, for a conversation with HeartKids CEO Lesley Jordan.Sami and Lesley chat about congenital heart disease, as well as the term Childhood-onset Heart Disease (CoHD) and what this means. Lesley gives us a quick catch-up on all things CoHD for new listeners, and takes us through some exciting upcoming events.Be sure to stick around and hear the Love Letters to the CoHD Community segment, where we play your dedications, shout-outs, and anonymous messages of love to those in the community, in acknowledgement of the significant population and unique journeys of those with Childhood-onset Heart Disease.HEARTKIDSFrom 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.auCREDITSHost: Sami GlastonburyGuest: Lesley JordanProducer:  Melissa Clarke

This summer (in Australia!), we're bringing you some fan favourite episodes of From the Heart Season 2, 2023! Here is Encore #3 - Genetic Counselling with Laura Yeates.Laura is a cardiac genetic counsellor and current PhD candidate with research projects focusing on inherited cardiomyopathy and arrhythmia. In this episode, Laura talks about what genetic counselling is, who can access it, and how genetic counselling is used to understand more about health conditions, and accessing the right supports around those conditions.HEARTKIDSFrom The Heart is brought to you by HeartKids, the only national not-for-profit solely focused on supporting and advocating for people affected by congenital and childhood heart disease. For support, information or guidance on your CHD journey, call the HeartKids Helpline on 1800 432 785 or visit the website at https://www.heartkids.org.auCREDITSHost: Sami GlastonburyGuest: Laura YeatesProducer: Melissa Clarke, Becky Oakley

This summer (in Australia!), we're bringing you some fan favourite episodes of From the Heart Season 2, 2023! Here is Encore #2 - Matt Nelson's StoryMatt has been touched by childhood heart disease (CHD) as both a husband and a father. Matt’s first wife Tina passed away in 2013 due to complications from hypertrophic cardiomyopathy. Two of Matt’s sons also live with this condition. In this episode Matt talks about the complexity of navigating diagnoses, bereavement, and the strength of his sons.Content WarningThis episode contains information about bereavement. Please listen in a safe space and remember you can pause if you need to. If any of the information about bereavement brings up worry for you, please contact any of the below helplines for supportBeyondBlue1300 22 4636 Available: 24/7Griefline1300 845 745Available: 8am to 8pm Monday to FridayKids Helpline1800 55 1800Available: 24/7Mensline1300 78 99 78Available: 24/7HEARTKIDSFrom The Heart is brought to you by HeartKids, the only national not-for-profit solely focused on supporting and advocating for people affected by congenital and childhood heart disease. For support, information or guidance on your CHD journey, call the HeartKids Helpline on 1800 432 785 or visit the website at https://www.heartkids.org.auCREDITSHost: Sami GlastonburyGuest: Matt Nelson Producer: Isobel Pritchard-Davies, Melissa Clarke 

This summer (in Australia!), we're bringing you some fan favourite episodes of From the Heart Season 2, 2023! Here is Encore #1 - Eve's StoryEve is a 23-year-old from Melbourne who lives with a congenital heart condition. Eve is a keen skier, ice hockey player and cold water swimmer! In this episode, Eve talks about how having a heart condition has impacted her body image and relationship with her body, her journey to becoming more independent with her health care, and the importance of support networks. LINKSJoin HeartKids' Instagram for teens and young people @youthzone_heartkids: www.instagram.com/youthzone_heartkidsHEARTKIDSFrom The Heart is brought to you by HeartKids, the only national not-for-profit solely focused on supporting and advocating for people affected by congenital and childhood heart disease. For support, information or guidance on your CHD journey, call the HeartKids Helpline on 1800 432 785 or visit the website at https://www.heartkids.org.auCREDITSHost: Rachael KnowlesGuest: Eve AlexiadisProducer: Isobel Pritchard-Davies

In this episode of "From the Heart," join our host, Rachel, for a special conversation with Jaidyn Stephenson, North Melbourne AFL Player, and dedicated HeartKids Ambassador. Rachel and Jaidyn discuss navigating his heart condition and achieving success in his AFL career. Tune in as Jaidyn shares insights into the special bond he has forged with HeartKids.HEARTKIDSFrom The Heart is brought to you by HeartKids, the only national not-for-profit solely focused on supporting and advocating for people affected by congenital and childhood heart disease. For support, information or guidance on your CHD journey, call the HeartKids Helpline on 1800 432 785 or visit the website at https://www.heartkids.org.auCREDITSHost: Rachael KnowlesGuest: Jaidyn StephensonProducer:  Becky Oakley

On this episode of From The Heart, we’re getting to know Monica Tolic – a heart teen from Adelaide who recently finished her last day of high school! With big goals in sight for her future, Rachael chats to Monica about growing up with a heart condition and managing through the highs chool years. Monica shares her thoughts on mental health, creating balance and becoming independent with her heart health.HEARTKIDSFrom The Heart is brought to you by HeartKids, the only national not-for-profit solely focused on supporting and advocating for people affected by congenital and childhood heart disease. For support, information or guidance on your CHD journey, call the HeartKids Helpline on 1800 432 785 or visit the website at https://www.heartkids.org.auCREDITSHost: Rachael KnowlesGuest: Monica TolicProducer:  Becky Oakley

In this episode of From the Heart, we're joined by Elle Pendrick, a HeartKid herself and member of our HeartKids Board. Elle is also the founder of Adulting Well - on a  mission to empower and educate people with chronic illnesses. In this episode Elle discusses navigating the financial aspects of living with, or caring for someone, with a childhood heart condition.For those new to From the Heart we highly recommend you check out an earlier interview we conducted with Elle on preparing for Open Heart Surgery.For more information and tips, check out Elle's recently released Ultimate Surgery Success Guide.Content note: This episode provides general ideas for navigating the financial aspects of living with a Childhood Heart Condition in Australia, but it does not provide financial advice. Everybody's situation is unique, so we strongly recommend you get independent financial advice.HEARTKIDSFrom The Heart is brought to you by HeartKids, the only national not-for-profit solely focused on supporting and advocating for people affected by congenital and childhood heart disease. For support, information or guidance on your CHD journey, call the HeartKids Helpline on 1800 432 785 or visit the website at https://www.heartkids.org.auCREDITSHost: Rachael KnowlesGuest: Elle PendrickProducer:  Becky Oakley