Alex the LIONHEART

Elizabeth Miroforidis, 37, Sydney, NSW

Staring at my tiny boy smothered beneath tubes, I’d have given anything to swap places.

My eight-month-old, Elias, was so weak, I knew he didn’t have much fight left.

Mother’s intuition had told me there was something wrong from birth when he wouldn’t feed properly, but no-one would listen to me.

Finally, at six weeks old, our precious son was diagnosed with Barth syndrome – a rare genetic form of cardiomyopathy.

Affecting males,