HeartKids NT

Hoptober is coming soon.

HeartKids latest preschools, school and kindergarten community fundraiser is launching this October.

We're calling for Starter Schools and Preschools to help get us going.

If you're keen to get your preschool, school or kindergarten involved, please contact us via [email protected]. We'd be delighted to hear from you.

For more details visit: www.hopforheartkids.org.au

Join us this October for the most important event of the year – Two Feet and A Heartbeat! 🏃‍♂️❤️🏃‍♀️
Marlow Lagoon, Palmerston - Sunday, 27th October
The Palmerston event at Marlow Lagoon will be a day to remember, with a playground for the kids, a coffee van, free morning tea, free ice cream and free face painting!

This isn’t just a fundraiser; it’s a day of support, connection, and community. Come together with families who understand the journey of living with childhood-onset heart disease (CoHD).
Invite your family and friends to be a part of this special morning—they’re an essential part of your heart kid’s support network. Create a team with them, walk side by side, raise awareness, and celebrate the incredible resilience of your heart kid.

Register, fundraise, and join us for a day filled with heartwarming moments and lasting connections.
Click on the link below to register:
https://www.twofeetheartbeat.org.au/Darwin

We Need Your Help!
HeartKids is dedicated to supporting those affected by CoHD, and we need your valuable input to make sure we're on the right track.
Are there gaps in the support, information, or resources you receive? Do you have ideas on how we can improve? Your feedback will help us tailor our services to better meet your needs and make a real difference in our community.
Please take a few minutes (5-10) to complete our survey by clicking the link below. Your opinion truly matters to us and will help shape the future of our support.
https://www.surveymonkey.com/r/L7JVKHY
Thank you for being a vital part of our community. Together, we can make a big impact!

Make a difference this October with HeartKids’ new Race to Remember challenge!
Whether you’re already active or looking to get moving, we invite you to take on one of our heart champion challenges and raise vital funds for HeartKids.

You can choose any activity that gets your body moving and heart pumping, or go head-to-head with some of Australia's premier athletes.

Pick your race, set your pace, and rally your friends and family to cheer you on. Ready to get started? Visit www.racetoremember.org.au to learn more!

💙 Happy Father's Day to All the Incredible Dads! 💙

Today, we celebrate the amazing dads who make the world a brighter place. Whether you're a new dad navigating the joys and challenges of fatherhood, a working dad balancing family and career, a step-dad embracing a blended family, or a special person who steps in with love and support—today is for you.

We honour the fathers who are no longer with us, whose love and guidance continue to shape our lives. We hold close in our hearts the dads who have experienced the unimaginable loss of a child

A special shoutout to the heart dads, who stand strong and brave through the journey of raising heart kids. Your strength, love, and dedication inspire us all.

Thank you for everything you do. Wishing you a day filled with love and joy!

Taking time to care for yourself doesn’t mean ‘me first.’ It means ‘me too.’

At HeartKids, we understand that it's easy to get caught up in the needs of others and forget about your own well-being. Remember, taking time for yourself is not selfish—it's necessary.

Whether it's a quiet cup of tea, a short walk, or just a few moments of deep breathing, self-care is vital. You are important too! Let's remind ourselves and each other that self-care is a part of caring for our families.

🌟 We Need Your Help! 🌟

HeartKids is dedicated to supporting those affected by CoHD, and we need your valuable input to make sure we're on the right track.

Are there gaps in the support, information, or resources you receive? Do you have ideas on how we can improve? Your feedback will help us tailor our services to better meet your needs and make a real difference in our community.

📋 Please take a few minutes (5-10) to complete our survey by clicking the link below. Your opinion truly matters to us and will help shape the future of our support.

https://www.surveymonkey.com/r/L7JVKHY

Thank you for being a vital part of our community. Together, we can make a big impact! 💖

Can we fit live entertainment, games, prizes, advice, information and connection into one free 90-minute online event?

Register now for Heart to Heart on September 3rd, and find out!

Heart to Heart is an exciting, free online event for teens 13-17 with childhood-onset heart conditions, and their siblings. This event is designed to inform and entertain, while helping you build connections with other young people just like you.

Tickets are free, and available at https://events.humanitix.com/heart-to-heart-2xuy6d95?c=meta. We can't wait to see you there!

Join us this October for the most important event of the year – Two Feet and A Heartbeat! 🏃‍♂️❤️🏃‍♀️

Marlow Lagoon, Palmerston - Sunday, 27th October

The Palmerston event at Marlow Lagoon will be a day to remember, with a playground for the kids, a coffee van, free morning tea, and free face painting! This isn’t just a fundraiser; it’s a day of support, connection, and community. Come together with families who understand the journey of living with childhood-onset heart disease (CoHD).

Invite your family and friends to be a part of this special morning—they’re an essential part of your heart kid’s support network. Create a team with them, walk side by side, raise awareness, and celebrate the incredible resilience of your heart kid.

Register, fundraise, and join us for a day filled with heartwarming moments and lasting connections.
Click on the link below to register:
https://www.twofeetheartbeat.org.au/Darwin

MAKE A DONATION
Two Feet & A Heartbeat 2024 : Make a donation today to support Two Feet & A Heartbeat event. Click here to make a donation: Darwin

HeartKids recently organised a heartwarming visit from members of the Darwin Salties at the Royal Darwin Hospital's cardiac clinic to celebrate Hero for HeartKids! The smiles and excitement were contagious as the players spent time with our amazing heart kids.

In a rare and "snappy" twist, we had special crocodile visitors from Crocodylus Park join the fun! The kids loved getting up close with these incredible creatures. 🐊

A big thank you to everyone involved.

It's been a busy couple of weeks for Hero for HeartKids in the NT! We're excited to share that Triple Eight Race Engineering and Supercheap Auto unveiled a special wildcard Indigenous livery for the recent Darwin Triple Crown, in conjunction with HeartKids Australia.

This beautiful artwork tells the story of 13-year-old heart kid Lilly, with the support of her brother Noah (11), mother Chantelle, and father Derrin from Larrakia Country. Darwin-based artist William Hewitt worked collaboratively with Lilly's family to bring this design to life.

🐰🌸 Happy Easter from all of us at HeartKids! 🌷🐣

Wishing you a day filled with love, joy, and plenty of chocolate eggs! 🍫 Remember to cherish the special moments with your loved ones and spread kindness wherever you go. 🌟

Sometimes children can feel overwhelmed or anxious. Creating a safe space can create a place for children to feel in control of their environment, and to reduce the amount of stimulation they are experiencing.

The raisingchildren.net.au website has some great suggestions for how to create a safe space. They suggest allowing your child to lead the activity and using household materials such as sheets, sleeping bags and chairs. Talk to your child about what you are creating, they might think of the space as a cave, or a rocket. It could also be as simple as an old carboard box and some pillows. Once created you can encourage them to use the space to read, rest or play. A great way to support children to learn strategies to manage their emotions.

If you would like to talk to someone about more strategies to support your child with feelings of stress or anxiety, our mental health social worker is available to SA families. Reach out by emailing [email protected] ❤

Visit: https://heartkids.org.au/ for available resources in caring for a kid with childhood-onset heart disease.

Thank you Palmerston council for lighting up the water tower in red and blue last night, for Sweetheart Day.
Thank you Nicole Simpson for sharung for sending in the photos.

Today is Sweetheart Day, raising awareness of Childhood onset Heart Disease (CoHD) across the country. Thinking of all our heart kid and heart angel families across the NT today.

If you live near Palmerstone, pop out to the water tower which is lighting up for Sweetheart Day. Take a photo of yourself at the site and share it with us below.

HeartKids’ annual Sweetheart Day fundraising campaign kicks off today, encouraging everyone to go beyond flowers and chocolates this Valentine’s Day and dig deep for Australian families impacted by Childhood-onset Heart Disease (CoHD) and to support crucial ongoing research into CoHD.

CoHD is the biggest cause of infant deaths in Australia, with over two hundred precious lives lost each year and one baby born every three hours with the disease. There is no cure.

CoHD is complex and often has implications throughout the whole of patients’ lives, as well as those of their carers and family members.

In the 2023 financial year HeartKids provided direct support to 1,412 families and 3,772 face-to-face support services. Funds raised from Sweetheart Day go to ensuring these support services continue, as well as significant research into the causes, management and treatment of CoHD.
Head to the Sweetheart Day page to donate at https://www.sweetheartday.org.au/

The new year can be a great time to embrace a fresh start. We can not only declutter our spaces, but also our mind, including old or unhelpful thinking patterns. Focusing on what we have, rather than what we want, can be a helpful mental reframe to support our overall well-being.

Gratitude triggers the release of dopamine and serotonin, those natural happiness boosters!

To give it a go, try the "3x3" gratitude practice: Take a few minutes each day or week to list three things you are grateful for under three headings – maybe try Personal life, Work (or study) life, and Self.

It's a simple practice with powerful results! Let us know what you are grateful for.

Photo by Donald Giannatti on Unsplash

The teen years are a time of significant change –with lots going on hormonally and in brain development during this time. Teens are finding their own identity in the world and developing independence from parents. It is normal for teens to need more sleep during this period, and perhaps support with impulse control and managing screen use.

Many teens with Childhood onset or Congenital Heart Disease may experience challenges with their mental or emotional health during these years due to perceived differences from peers, coping with medical needs or surgery and anxiety about their future.

The HeartKids social worker can support teens from the age of 12, as well as parents, with professional, free, and confidential counselling for any mental health challenges they experience during this time.

We also have a free mindfulness resource for teens to support their mental health and wellbeing while in hospital, plus many resources to support transition to adult cardiology care.

To chat about the support available, or to request a digital copy of the mindfulness booklet, please email [email protected].

Image courtesy Matthew Ball on Unsplash

Happy New Year to all of our Heart Families!

Embracing the dawn of a New Year brings with it a world of possibilities and fresh opportunities. As we stand at the threshold of 2024, let's greet the unknown with optimism, resilience, and an open heart. Here's to a year brimming with new chances to learn, grow, and create wonderful memories.

We have many exciting things happening this year and we can't wait to share them with you!

JOIN HEARTKIDS FUNDRAISING TEAM

We are looking for a Fundraising Coordinator, with 2-3 years experience, to join the HeartKids National Fundraising Team, based in our hub office in Kent Town, South Australia.

* Permanent, full-time with a flexible work-from-home hybrid policy
* Kent Town office location, close to public transport and services

Join a dynamic team and make a difference HeartKids and their families impacted by congenital heart disease (CHD)

HeartKids is the only national not-for-profit organisation solely focused on supporting and advocating for all people impacted by congenital heart disease (CHD), one of Australia's largest causes of infant death.

This is an exciting opportunity to join our organisation as we expand the growth of our national services to support our HeartKids, their families, and communities, and be part of a team with strong values and a commitment to delivering impact.

Click on the link to view the application portal and PD.

Fundraising and Events Coordinator - Job in Adelaide - HeartKids Limited An exciting opportunity for an experienced and motivated fundraising professional to contribute to the growth of HeartKids in the SA region.

Today is International Volunteer Day. We'd like to thank all the wonderful volunteers who give their time in support of babies, children, teens and adults impacted by congenital heart disease.
A big thank you to our heart parents, friends, corporate partners, board members and community groups who donate their time and skills to assist others. HeartKids thanks you. 💙❤💙

🎙️ New Episode of From the Heart - Navigating the financial aspects of Childhood Heart Disease 🎧

In this episode of From the Heart, we're joined by Elle Pendrick, HeartKid and 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. Tune in to hear Elle's valuable insights on useful financial tools and leaning in to supports available to you!

You can find this insightful episode on Spotify, Apple Podcasts, your favorite podcasting app, or access it here: https://www.buzzsprout.com/1900105/13886669-navigating-the-financial-aspects-of-childhood-heart-disease-with-elle-pendrick.mp3?download=true


Content note: This episode provides general ideas for navigating the financial aspects of living with a Childhood Heart Condition in Australia, it does not provide financial advice. Everybody's situation is unique, so we strongly recommend you get independent financial advice.

Thank you to everyone who came out early to beat the Darwin heat for today's Two Feet & A Heartbeat walk.

Wonderful to see a great turn out by our Darwin families.

Thank you to Chrissy, our Darwin Support Coordinator, who ran the event after only 3 days in the role.

Tomorrow is the Two Feet & A Heartbeat Walk in Darwin.
Come along and meet your new Darwin Support Coordinator, Chrissy Grant, who is filling in for Nicole Simpson while she is on maternity leave. Meet other local families going through their own CoHD journey, like little Adira...

💙Meet HeartKids Ambassador: Heart Kid Adira Soni 💙

For Shipra and Yugesh Soni, their journey with congenital heart disease started during a 20-week pregnancy scan, which revealed that their daughter Adira had a heart condition called Tetralogy of Fallot (ToF) along with other complications.

Adira underwent her first open heart surgery at just six months of age to repair her ToF. While the family was grateful for the good results of the amniotic testing, there was still a chance that something may not have been picked up.

Despite their worries and the emotional and financial strain, they relied on the support of HeartKids to get them through the difficult times.
"Being a HeartKid family is hard, there are very few people around you who understand the journey you are on," says Shipra, Adira's mother. "But the HeartKid family coordinators are there every step of the way. You know you can reach out to them, and they will understand and help."

Adira has just turned one and is now a happy, relaxed toddler who loves to play and smile. However, she is still adjusting to stranger danger after her surgery, which is a common reaction for children who have undergone major surgery at a young age.

It is uncertain if Adira will need further surgery in the future, but Shipra and Yugesh know that HeartKids is only a phone call or a catch-up away. ❤

We are looking forward to catching up with the Darwin HeartKids Community at tomorrow's event. You will even meet little Adira!

World Mental Health Day is October 10, and mental health week is between 7-14 October. The theme for this year is Mind. Body. Environment. A reminder that taking care of our mental health requires attention to our inner world, as well as our outer world.

To celebrate mental health week, we invite you to try a small daily practice called ‘Noticing Glimmers’.

A glimmer is a small moment of time that brings you a sense of ease, joy or peace, and is the opposite of a trigger. Glimmers will sooth our central nervous system, while triggers will bring us to a state of stress.

Examples of glimmers are patting your dog or cat, listening to a favourite song, feeling the sun on your face, the smell of rain, or tasting the first sip of your morning coffee.

Glimmers will be different for everyone – see if you can notice at least one a day for a week for Mental health week – we would love to hear about what glimmers for you!

Picture by Noah Clark via Unsplash

🎙️ New episode - From the Heart Podcast 🎧

CHD Community and Me: Ellen Mitchell's Story

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.

Listen on Spotify, Apple Podcasts, your favorite podcasting app, or access the episode directly via our website: https://www.heartkids.org.au/page/245/heartkids-podcast

The journey of parenting a child with congenital or acquired heart disease can be incredibly tough. The stress and loneliness can sometimes be overwhelming.

Many times, parents and carers feel isolated because family and friends may not fully understand what you are going through and may be insensitive in actions or comments at times.

Many families may be impacted by "chronic sorrow," which captures the feelings of anger, guilt, sadness, and grief that can affect both you and your child due to the impact of childhood onset heart disease.

You're not alone in this journey, and HeartKids are here to support you. We will address the challenging topic of isolation and chronic sorrow in the next heart and minds parent discussion group. Facilitated by HeartKids social worker Maureen, this will be a safe space where you can express yourself without judgment and share and learn from others in similar positions, while cultivating connections with other parents to support you in your journey.

We hope you can join us.

Supporting parent wellbeing – addressing isolation and cultivating connections
Wednesday October 18 7.30-8.30pm
Registrations essential to receive zoom link https://bit.ly/3rtCsKK

If you prefer, individual counselling support is available by contacting Maureen on 0417715710

❤ A heartfelt congratulations to Jaidyn Stephenson for receiving the well-deserved Peter Scanlon Community Award 2023! 🏅
Jaidyn's dedication to HeartKids is nothing short of remarkable. His journey, from being diagnosed with a heart condition, supporting his sister who is also a heart kid, to becoming an ambassador, is an inspiration to us all.
For six remarkable years, Jaidyn has been our HeartKids ambassador, bringing hope, inspiration, and smiles to the faces of young heart patients and their families. He's shown that a kind heart and a willingness to make a difference can create a lasting impact.
From raising over $300,000 with his annual "Jaidyn's Lunch for the Kids" to sharing his story at HeartKids Teen Camps, Jaidyn's impact knows no bounds. He's a true role model, a friend to many, and a genuine champion for the cause.
Thank you, Jaidyn, for your incredible generosity and the hope you bring to the HeartKids community. 💙🙌
Read more about Jaidyn’s Peter Scanlon Award win here: https://www.nmfc.com.au/.../stephenson-claims-peter...
Photo credit: North Melbourne Football Club;

Do you have questions about exercise physiology and CHD? Check out the latest 'From the Heart' podcast below...

https://m.facebook.com/story.php?story_fbid=694201309400789&id=100064327789544&mibextid=ZbWKwL

🎙️ New episode - From the Heart Podcast 🎧

Exercise Physiology and CHD - Fitness for Life: Dr Derek Tran

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.

Listen on Spotify, Apple Podcasts, your favorite podcasting app, or access the episode directly via our website: https://www.heartkids.org.au/page/245/heartkids-podcast