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!
CREDITS
Host: Rachael Knowles
Guest: Sarah Purdom
Producer: Becky Oakley
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
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.
CREDITS
Host: Rachael Knowles
Guest: CJ Gagliardi
Producer: Becky Oakley
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
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.
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
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.
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: Matt Tognini
Producer: 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.
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
MISSING SCHOOL
1300 237 234
Children should be seen and heard.
Read more about Missing School and their initiatives at their site https://missingschool.org.au/
CREDITS
Host: Sami Glastonbury
Guest: Megan Gilmour
Producer: 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.
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: Lesley Jordan
Producer: 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.
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 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.au
CREDITS
Host: Sami Glastonbury
Guest: Laura Yeates
Producer: 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 Story
Matt 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 Warning
This 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 support
BeyondBlue
1300 22 4636
Available: 24/7
Griefline
1300 845 745
Available: 8am to 8pm Monday to Friday
Kids Helpline
1800 55 1800
Available: 24/7
Mensline
1300 78 99 78
Available: 24/7
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 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.au
CREDITS
Host: Sami Glastonbury
Guest: 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 Story
Eve 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.
LINKS
Join HeartKids' Instagram for teens and young people @youthzone_heartkids: www.instagram.com/youthzone_heartkids
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 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.au
CREDITS
Host: Rachael Knowles
Guest: Eve Alexiadis
Producer: 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.
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 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.au
CREDITS
Host: Rachael Knowles
Guest: Jaidyn Stephenson
Producer: 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.
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 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.au
CREDITS
Host: Rachael Knowles
Guest: Monica Tolic
Producer: 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.
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 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.au
CREDITS
Host: Rachael Knowles
Guest: Elle Pendrick
Producer: Becky Oakley
In this episode of From the Heart, we're joined by Tess Waterhouse who shares her remarkable journey of receiving a diagnosis of Congenital Heart Disease (CHD) at age 23. Tess shares her experience with open-heart surgery for her atrial septal defect (ASD) and reflects on her recovery process, coping strategies, and the crucial support networks that helped her. She offers valuable insights on self-advocacy and a message of hope and guidance for others facing a similar diagnosis.
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 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.au
CREDITS
Host: Rachael Knowles
Guest: Tess Waterhouse
Producer: Becky Oakley
This episode, Sami chats to Dr Gavin Wheaton about Rheumatic Heart Disease, and the Deadly Heart Trek.
Dr Wheaton is a paediatric cardiologist at Adelaide’s Women and Children’s Hospital, and part of the Deadly Heart Trek.
Deadly Heart Trek is a group of experienced doctors, local health workers and aboriginal leaders visiting communities across Australia to diagnose, treat and help prevent RHD, while learning and responding to the needs of communities.
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 congenital and childhood heart disease. For support, information or guidance on your CHD journey, call the HeartKids Helpline on 1800 432 785 or visit our website: https://www.heartkids.org.au
LINKS
Learn more about Rheumatic Heart Disease (RHD):
https://www.rhdaustralia.org.au/
Learn more about Deadly Heart Trek:
https://deadlyhearttrek.org/
CREDITS
Host: Sami Glastonbury
Guest: Dr Gavin Wheaton
Producer: Melissa Clarke
This episode, Sami chats to Ellen Mitchell about the impact of becoming a Heart Mum, and how she gives back to the CHD community.
Ellen is the Regional Community Coordinator for HeartKids in South Australia. Through her work, Ellen attends regional cardiac clinics, assists in facilitating community events, connecting peers across South Australia, and supporting the community in innovative ways.
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 congenital and childhood heart disease. For support, information or guidance on your CHD journey, call the HeartKids Helpline on 1800 432 785 or visit our website: https://www.heartkids.org.au
LINKS
Learn more about Two Feet and a Heartbeat:
https://www.twofeetheartbeat.org.au/
CREDITS
Host: Sami Glastonbury
Guest: Ellen Mitchell
Producer: Melissa Clarke
This episode, Sami chats to Dr Derek Tran, about exercise physiology, and supporting fitness for those with Congenital or Childhood-Onset Heart Disease (CHD)
Dr Tran is a lecturer at the University of Sydney School of Medicine and Senior Exercise Physiologist at the Department of Cardiology, Royal Prince Alfred Hospital.
Derek is also the co-coordinator of the world’s largest, and most inclusive CHD exercise clinical trials, called CH-FIT – striving to optimise exercise prescription and delivery for those with CHD.
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 congenital and childhood heart disease. For support, information or guidance on your CHD journey, call the HeartKids Helpline on 1800 432 785 or visit our website: https://www.heartkids.org.au
LINKS
Learn more about CH-FIT:
https://www.hri.org.au/our-research/clinical-research/optimising-exercise-prescription-and-delivery-in-congenital-heart-disease-the-congenital-heart-fitness-intervention-trial-ch-fit
CREDITS
Host: Sami Glastonbury
Guest: Dr Derek Tran
Producer: Melissa Clarke
This episode, Tahnee chats with Jayhrani Nicholls, a registered nurse and Aboriginal woman who works at Ngak Min Health, located on the Djarragun College campus in Gordonvale, Queensland. With a passion for empowering individuals to take control of their own health, Jayhrani has been dedicating her skills and expertise to supporting patients with Rheumatic Heart Disease (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 congenital and childhood heart disease. For support, information or guidance on your CHD journey, call the HeartKids Helpline on 1800 432 785 or visit our website: https://www.heartkids.org.au
LINKS
Learn more about RHD:
http://www.rhdaustralia.org.au
CREDITS
Host: Tahnee Jash
Guest: Jayrahni Nicholls
Producer: Becky Oakley, Melissa Clarke
In this episode, Rachael chats with Ahmad, a remarkable 17-year-old who faced a life-saving heart transplant during the pandemic. His journey is a testament to unwavering resilience, overcoming challenges which included a leg amputation in his journey with CHD. Get ready to be inspired by Ahmad's indomitable spirit and unwavering determination to embrace all that life has to offer.
Content note: The content touches on medical procedures and challenges faced. If you or someone you know may find this content distressing, we encourage you to approach this episode with care or consider listening with a supportive presence.
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 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.au
CREDITS
Host: Rachael Knowles
Guest: Ahmad El Haj Youssef
Producer: Becky Oakley
In this episode, Rachael interviews May Chan and Bambang Kurnia, from the Royal Children's Hospital in Melbourne. May is an experienced Clinical Nurse Consultant in Cardiac Surgery, with a tenure at RCH since 1985. Her primary role involves managing and coordinating teams for cardiac surgeries, ensuring the highest standard of care for patients and their families. Joining May is her colleague Bambang Kurnia, an Associate Unit Manager at RCH. Bambang works closely with May in the cardiac theatre team, contributing his expertise to enhance the quality of healthcare provided.
Content note: The content touches on the topic of pediatric cardiology and the challenges faced in this field. If you or someone you know may find this content distressing, we encourage you to approach this episode with care or consider listening with a supportive presence.
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 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.au
CREDITS
Host: Rachael Knowles
Guests: May Chan and Bambang Kurnia
Producer: Becky Oakley
In this episode of From the Heart, Rachael Knowles speaks with Syeda Sultana a devoted sibling and steadfast advocate for her brother who sadly passed away in 2022. A passionate advocate for equitable healthcare, Syeda is now an aspiring medical student with a keen interest in congenital heart defects, hoping to one day to make a difference in the field of paediatric cardiology.
Content note: This episode of From the Heart contains discussions of loss and grief related to a congenital heart defect. The content also touches on the topic of pediatric cardiology and the challenges faced in this field. If you or someone you know may find this content distressing, we encourage you to approach this episode with care or consider listening with a supportive presence.
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 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.au
CREDITS
Host: Rachael Knowles
Guest: Syeda Sultana
Producer: Becky Oakley
Mel is a project coordinator at HeartKids, as part of the National Action Plan, implemented to reduce the impact of childhood heart disease in Australia and achieve the goal that people with childhood-onset heart disease live longer, healthier and more productive lives.
In this episode, Mel chats about the projects she runs at HeartKids, focusing on increasing support for families online, and over the phone.
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 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.au
CREDITS
Host: Sami Glastonbury
Guest: Melissa Clarke
Producer: Melissa Clarke, Becky Oakley
Growth and Resilience Through the Journey: Laura Achilles' Adult CHD Story
44:48
An active and full life with CHD: Jeremy Richardson's Story
44:03
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Elijah's Journey: Embracing Identity, Culture, and Confidence as a Young Adult with CHD
30:38
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Better Care for RHD: Insights from Erin Ferguson at Happy Heart Clinic
37:38
Resilience & Discovery: Sarah's heart journey
26:58
Creativity, optimism, and community: CJ's journey with bicuspid aortic valve
15:39
Amber Adamson - Ask a nurse anything!
38:31
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My heart kid dad journey: From childhood to adulthood - Matt's Story
26:07
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Missing School, and the impact of critical health on education, and social experiences - Megan Gilmour
39:52
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What is Childhood-onset Heart Disease? HeartKids CEO Lesley Jordan takes us through this term
22:41
2023 Encore #3: What is Genetic Counselling? Laura Yeates
29:53
2023 Encore #2: How Cardiomyopathy Impacted My Family... Matt Nelson's Story
25:56
2023 Encore #1: Growing Up With A Heart Condition... Eve's Story
31:10
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Life, footy and supporting the HeartKids community with Jaidyn Stephenson, HeartKids Ambassador
12:11
High school and life beyond as a HeartKid - Monica's Story
29:05
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Navigating the financial aspects of Childhood Heart Disease with Elle Pendrick
28:25
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My Adult Congenital Heart Disease Diagnosis Journey: Tess' Story
31:38
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Deadly Heart Trek, and Rheumatic Heart Disease: Dr Gavin Wheaton
33:56
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CHD Community and Me: Ellen Mitchell's Story
35:13
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Exercise Physiology and CHD - Fitness for Life: Dr Derek Tran
25:30
Empowering Health: A Conversation with RN Jayhrani Nicholls on supporting young people with Rheumatic Heart Disease
22:20
From Heart Transplant to Wheelchair Sport: Ahmad's Incredible Journey
20:51
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Cardiac Surgery Care: May Chan and Bambang Kurnia
27:47
HeartKid Sibling and Health Care Advocate: Syeda's Story
33:02
1800 Helpline: How Can I Be the Support You Need? ... Mel Clarke's Story
26:24