Max Pini wasn’t expected to survive long beyond birth.
But the bubbly, energetic six-year-old Point Cook boy continues to defy the odds – despite six strokes and undergoing open-heart surgery four times, including his first when he was just nine days old following heart failure.
Max was born with a complex cyanotic congenital heart defect, a life-shortening condition that results in a low blood-oxygen level.
During an operation to correct a twisted bowel, he started having seizures and had his first stroke aged just one month.
Following his third open-heart surgery, he was struck down by another three strokes that left him with weakness on his left side.
Despite getting back to walking independently, Max has lost the use of his left arm.
His parents, Mathew and Kirsten, are constantly on edge knowing each day with their son could be the last.
“Sometimes he wakes up and says he doesn’t want to do it any more,” Mr Pini said. “When you hear your son say something like that, it’s heartbreaking.”
As well as epilepsy, severe migraines, autism and anxiety attacks due to his regular hospital visits and almost daily medical appointments, Max also has heterotaxy – meaning many of his organs are in the wrong position.
He has no spleen and is beset by balance, feeding and speech issues.
Last year, after more surgery on his heart, he suffered another stroke and now has balance difficulties and involuntary twitching of his left arm and leg.
Mrs Pini said Max was constantly at risk.
“Because of the set-up of his heart, even catching the common cold can cause another stroke,” she said.
Max needs a new saturation monitor to keep track of his oxygen levels and heart rate at home, tie-down anchors so his wheelchair can go on the school bus and other equipment to help him around the house.
Fundraiser for Pini family
To help the Pini family, a fundraiser will be held this Sunday from 11am to 2pm at The Brook at Sneydes, 215 Sneydes Road, Point Cook.
It will include stalls, sausage sizzle, raffles, face-painting and children’s entertainment. Entry is by gold coin donation.
Visit the Support for Maxwell Pini Facebook page, or to donate to the raffle, phone Jodie Turner on 9394 6444.
