This October, Emilia and her family will join the HeartKids community at the Mildura Two Feet & A Heartbeat walk.
Emilia was diagnosed with Kawasaki Disease at just four months old, after a day trip to Melbourne for a follow-up appointment turned into an unexpected admission to the cardiac ward.
Her mother, Danielle, shares their family’s journey and how HeartKids helped them feel supported and less alone.
Can you tell us about Emilia’s heart journey?
Our journey is a result of a late diagnosis and treatment of Kawasaki Disease at found months old. Kawasaki Disease can cause serious inflammation and damage to the heart when not treated in time and unfortunately, Emilia’s heart was damaged. We received treatment, but it was just too late. At our two-week follow-up appointment, what was meant to be a day trip to Melbourne turned into an admission to the cardiac ward.
We had our appointment at RCH and about an hour later our cardiologist called and said:
“I’ve just checked these again with someone else. You can’t go back home to Mildura today. You need to be admitted.”
So I went back to hospital with the same overnight bag we’d packed for our day trip.
That’s when it became real. Our baby had a serious heart condition.
I was alone in Melbourne while my partner and our two older girls were six hours away in Mildura. I was scared, overwhelmed and didn’t really understand what was happening. Then someone from HeartKids knocked on my door. They gave me a little bag of information and support. I can’t remember who it was, but I’ll never forget that someone was there.
Later, I attended a HeartKids morning tea and met other families. There were tiny babies who had already undergone open-heart surgery and babies who had never even left hospital after being born. Our situation was still incredibly frightening, but I began to realise just how many families were walking this journey.
How has HeartKids supported your family?
Knowing someone is there. Having HeartKids there makes that journey a little less lonely.
Everyone goes through the guilt. Should I have taken her to hospital sooner? Would things have been different if we’d got to Melbourne earlier? Did I miss something?
I don’t think those questions ever completely disappear. But what helps is knowing there are people who understand. People who have walked this road. People who know what it’s like to sit beside a hospital bed, terrified for your child. People who remind you that you’re not alone.
What do you wish more people understood about childhood heart conditions?
Our story is also a reminder that childhood-onset heart disease doesn’t always mean a baby is born with a heart condition. Sometimes it happens suddenly, to a baby who was completely healthy just days before. That’s why awareness matters, that’s why support matters and that’s why HeartKids matters.
Heart kids are fighters. Emilia wants to be a normal kid. She jumps around trying to do gymnastics.
She copies her big sisters. She laughs, plays and absolutely loves life, which is what these kids deserve. They deserve to be treated like normal kids. Yes, they have a heart condition. Yes, we need to be a little more careful. But we don’t want their diagnosis to take away their spirit, because these children are incredibly resilient.
What would you say to another heart family?
Our hope is that by sharing Emilia’s story, we can raise awareness that childhood-onset heart disease isn’t always something a baby is born with. Sometimes it happens suddenly. Sometimes it happens to a baby who was completely healthy just days before.
Sometimes, a family simply needs someone to say: “We’re here. You’re not alone.”
For every heart kid, every heart family and every parent sitting beside a hospital bed wondering what happens next, we are here. ❤️
To support families like Emilia’s, register to attend your local Two Feet & A Heartbeat walk today.
