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.

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.

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.

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.

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.

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 Hayes

Emily 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.au

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
Guests: Emily Hayes
Producer: 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. 

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: Rachael Knowles
Guests: Annabel Turner
Producer: 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.

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

Stacey Micallef

From 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. 

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: Rachael Knowles
Guests: Stacey Micallef
Producer: 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.

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

Carlye Crank

Carlye 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. 

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: Rachael Knowles
Guests: Carlye Crank
Producer: 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.

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
Guests: Tanika Parker and Genavie Tabuai
Producer: 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.

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: Mitch McGovern
Producer: 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.

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

SIBLINGS AUSTRALIA

Siblings 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 here

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: Dr Shannon Schedlich
Producer: 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.

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: 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.

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: Sami Glastonbury
Guest: Mahan Ahmadiram
Producer:  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.

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

THROUGH THE UNEXPECTED
If 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 Unexpected
Pink Elephants
Red Nose Grief and Loss

CREDITS
Host: Sami Glastonbury
Guest: Cindy Hutchison
Producer: 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.

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: Sami Glastonbury
Guest: Chloe Peck
Producer:  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 Ferguson

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.


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: Tahnee Jash
Guest: Erin Ferguson
Producer:  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 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.

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

OUR RARE LIFE
Danielle 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.

CREDITS
Host: Sami Glastonbury
Guest: Danielle Green
Producer:  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 Nurse

In 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.

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: Amber Adamson
Producer:  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.

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

HEALING HEARTS BEYOND
Kate owns and operates at Healing Hearts Beyond in Victoria.
Visit her website here for more information, resources, and guidance.

CREDITS
Host: Sami Glastonbury
Guest: Kate Strickland
Producer:  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 Story

Elijah, 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.

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: Tahnee Jash
Guest: Elijah Hill
Producer: 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.

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: Sami Glastonbury
Producer:  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. 

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: Sami Glastonbury
Guest: Amy Heafield
Producer:  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.au

THE COMPLETE RACE DRIVER
@the_complete_race_driver
Head 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.

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: Audrey Keillor
Producers:  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. 

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

OUR RARE LIFE
Danielle 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.

CREDITS
Host: Sami Glastonbury
Guest: Danielle Green
Producer:  Melissa Clarke