In an ambulance trip from Bendigo to Melbourne Zeke Harrison died five times.
Zeke was just a few days old and his parents had no idea he suffered from a rare metabolic disorder called maple syrup urine disease (MSUD).
Dad Corey Harrison said Zeke hadn’t been eating or sleeping properly but doctors kept saying there was nothing to be concerned about.
But less than a week after after Zeke was born his mother got a call from Melbourne to say doctors had picked up an abnormality in Zeke’s heel prick test.
“Then they rang back and said there was an ambulance on the way and he needed to go to Melbourne,” Mr Harrison said.
“He actually died five times on the way to Melbourne.
“When I got back from working – I’m a truck driver – I got a call saying he was on life support.
“That was a tough drive. I just thought, ‘is he going to be alive when I get there?’”
What greeted Mr Harrison when he arrived at the hospital is something he will never forget.
“I was led to where he was and there were machines and tubes coming out of him everywhere,” he said.
“I just sat there and stared at him for hours, I didn’t know what to do.”
Mr Harrison eventually discovered his son had MSUD a genetic abnormality which meant he was unable to break down protein.
The condition means Zeke, now a bubbly two-year-old must follow a strict diet mostly made up of fruit and vegetables. He also has a nasal gastric tube which gives him a special formula to counteract the protein he does eat.
“He has to be watched 24/7,” Mr Harrison said. “If he picks up something off the floor and eats it, and that’s what kids do, it could kill him.”
Just seven people in Australia suffer from MSUD but Mr Harrison said there was light at the end of the tunnel for Zeke.
“The only cure is for him to get a new liver,” he said.
“We’ve just been talking to the transplant team and they are going to start testing his liver in the next month and then he will go on the list for a transplant.
“There’s lots of stories about people in America who have had transplants and they were just normal kids after that.”
Zeke’s battle has also inspired his family to organise a special fundraiser for the Royal Children’s Hospital through the Good Friday Appeal.
At the height of his illness Zeke was in hospital once a week, so Mr Harrison said this was his way of giving back.
Mr Harrison’s partner Laura Bish has been the driver of the fundraiser which will be held on Good Friday at the Wycheproof Shire Hall.
The night will include a two-course dinner, entertainment and a charity auction.
Tickets are on sale now for $40 or $350 for a table of ten.
For more information visit www.zekesfundraiser.org,au or call the Wycheproof Resource Centre on