Words by Alanah Frost, Herald Sun
Images by Alex Coppel, Herald Sun
For Gus Rule, life has been a battle since before he was born.
At 28 weeks gestation, parents Jacki and John were told there was “something wrong” with their baby’s heart.
A week later Gus was born, small enough to fit in his father’s hand.
The tiny newborn was diagnosed with Wolff-Parkinson-White syndrome, a rare genetic condition which causes abnormalities in the heart’s electrical circuit.
It set the young family on a rollercoaster. “It was really touch and go for the first six weeks because things just kept coming to light,” Jacki says.
“Gus was ventilated for a long time — he didn’t breathe on his own until he was 2-3 months old.
“Initially when he was in NICU we didn’t know if he would have brain damage.”
Now 4, Gus has been dealt everything from a bowel blockage, to laser eye surgery and chronic lung disease, as well as hospital stays whenever he gets a cold.
But Jacki believes they are the fortunate ones.
“I just feel so lucky — a lot of people say ‘how unlucky could you be’.
“(But now) he is just such a bright spark. So much attitude, such a bright personality.
“I just feel so lucky.”