With this blog, I want to begin something that has lived inside me for a long time. I’m sharing the story of our daughter Liv because I feel it deserves to be told. Not just to raise awareness for a rare condition like LQTS, but also to show how much love, hope, and strength can live inside one tiny human being.

This is my first post — honest, vulnerable, and straight from the heart.

Thank you for reading along.

From the moment Liv was born, we knew she was special. A bright, sweet little girl with a strong will of her own. But what we didn’t know, was that she carried something rare inside her: a genetic heart condition we would only discover after a series of unsettling moments.

During my pregnancy, doctors noticed irregular heart rhythms on the monitor. We were told that this sometimes happens in unborn babies, and that it likely meant nothing. That she might still outgrow it. I tried to hold onto those words, even though something inside me felt uneasy.

But from the moment Liv entered the world, things moved fast. Before I could even fully recover from childbirth, tests began. And on her very first day of life, we got the diagnosis: she had Long QT Syndrome (LQTS) – a rare genetic condition that can cause dangerous heart rhythm disturbances, and in some cases, even sudden cardiac arrest.

That diagnosis pulled the ground from under our feet.

At first, we didn’t fully understand what it meant. We only knew it was serious. And that it had changed our lives forever.

On her very first day of life, we got the diagnosis: she had Long QT Syndrome – a rare genetic condition that can cause dangerous heart rhythm disturbances, and in some cases, even sudden cardiac arrest.

We gradually learned what LQTS is, how we could protect her, what medication she would need, and what the risks were. We also learned that we were not alone – but that there is very little awareness about this condition, especially here in Belgium.

Today, Liv is a joyful, lively toddler who just turned two. She dances, laughs, eats chocolate sprinkles like it’s a party, and melts hearts with her independent little spirit. Everyone who meets her smiles. She’s curious, funny, full of life – and so much more than her diagnosis. But the diagnosis is always there. And with it, the responsibility, the worry, and the constant alertness.

I started this blog to share our story – and Liv’s. To show what it means to live with LQTS, what it does to a family, and how we try to stay hopeful.

And also: because there is hope. In the U.S., researchers are currently working on a treatment for LQTS. Thanks to people like Dr. Michael Ackerman and organizations like the SADS Foundation, there may come a day when children like Liv no longer need daily medication or live with constant uncertainty.

I want to be part of that hope.

For Liv.

For other families.

For awareness.

Thank you for reading.

– Elise

#LivingForLiv

You can keep up-to-date with Liv and Elise’s story – all the way from Belgium! – at https://living4liv.substack.com/.