And the wrenchingly lonely journey felt by some mums and families in Griffith and the wider MIA area has made them band together to make sure noone else goes through the same thing alone.

Melissa Harris, Shannan Holland, Chelsea Wilson and Nicole Ivanoff are some of these mums making up Riverina Heart Warriors, and share their story in the hopes of sparking hope in others.

Melissa was told her daughter Tekia would not survive when she was only a few months old. Now 13, Tekia herself is enjoying life.

"My friends are really great - the teachers treat me a little differently but that is good because they understand," Tekia said.

Carrying her monitor with her at school, her condition requires constant vigilance. Yet Melissa hopes her success story alone is enough to inspire hope.

For Shannan, having her now four-year-old son Moses was diagnosed just two weeks before her due date, and after several operations later, she says when she found the group it provided unparalleled support.

And while Chelsea's son Jaxon has not had surgery yet, she also had no idea what she was up against at the diagnosis.

"I just encourage everyone to reach out for support."

With February being Congenital Heart Defect awareness month, the group aim to make others aware the support is there.

They all hope that anyone else finding themselves in their position reaches out and knows the support network is there to help share the emotional load.

For Ms Wilson, she wants the community to know there is no cure - it is a lifelong battle.

"With February being National Awareness Month, our thoughts are with the heart kids, heart angels - it is the biggest killer of babies in Australia," Chelsea said.

And while the group of nine mums with heart kids are passionate about supporting each other, at this time it is too hard for them to actively organise any fundraising events on their own.

“Our active messenger chat group is a supportive network of fellow local heart mums which I find is very reassuring and comforting to know we have a place to share our worries, reliefs, celebrations, nerves, questions, etc really just any slice of our warrior journeys," Nicole said.

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Knowing their journeys and feelings can be shared amongst fellow heart mums who unitedly understand is a constant source of comfort. 

"Even though we are geographically disadvantaged from our children’s medical appointments we have support and understanding from fellow heart families in the area who all understand and know too well just how far we are from our heart bases."

Those wishing to reach our for support, or anyone looking to help in any way, contact the Riverina Heart Warriors on Facebook.

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