Zeke Harrison is a tough kid. Most almost-two-year-olds are made of rough and tumble tough, but Zeke has an extra dose of that resilience.
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Zeke, son of Wycheproof’s Corey Harrison, has “flat lined” more times than Corey cares to recall.
His tiny little body has clinically died on several occasions, thankfully resuscitated each time by expert medical professionals.
The fine line between life and death that Zeke has tiptoed around on several occasions is something his family has not taken for granted.
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It is stark contrast between the horrific experience of seeing his tiny baby son hooked up to a myriad of tubes and machines to now having a smiling boy with a cheeky outlook on life who will turn two on Friday.
Corey always knew he wanted to do something to in some way return the incredible gift of his son’s life to the staff at the Royal Children’s Hospital.
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Rough Start
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Zeke came into this world amid chaos and emergency when he was born not breathing with the umbilical cord wrapped around his neck.
“He had a pretty rough start,” Corey said.
“When he was born a code blue was called and within seconds the room was filled with doctors and nurses.”
The next few seconds ticked by in slow motion. Neither of his parents knew what was happening as they waited anxiously to hear the cry of their second-born son.
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Eventually it came to the relief of the room – Zeke’s first cry.
While Zeke spent some time in a humidicrib getting a head start on life, all the immediate test results came back without concern.
“He seemed to be coming good,” Corey recalls.
“On the second day he was allowed into his little bed and he was feeding and doing all the normal things a baby should.”
On around day five Zeke was allowed home to Wycheproof to the excitement of big brother Jake and the community.
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“At first he seemed ok, but then things changed,” Corey said.
“He wasn’t eating or sleeping properly, he would sleep for hours and then just be awake for minutes or it would be the other way around – sleeping for minutes and awake for hours, we knew something wasn’t right.
“We got on the phone to doctors, but they were telling us it was all normal and it would come good.”
There is a lot to be said for the intuition of parents and Zeke’s mum and dad knew something wasn’t right with their newborn baby.
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Phone Call
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Then came the phone call.
Just days after Zeke’s homecoming, the Royal Children’s Hospital called to say the results from Zeke’s newborn heelprick test showed an abnormality in his blood.
“They told us not to stress too much, they would double check a few things and ring back in half an hour,” Corey said.
It was harvest time and Corey being a truck driver for the Wycheproof Grain Company was flat out, but standing by for the phone call from Zeke’s mum Jazmin to find out the outcome of the initial warning.
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“Then they rang back. They said an ambulance had been dispatched and was on its way to get Zeke to take him back to Bendigo.”
Panic set in. Corey didn’t know what to do. That thought that something wasn’t quite right had been confirmed, yet Zeke looked fine and they had been told he would be fine.
Zeke and his mum set off in the ambulance to Bendigo.
“They stopped half way to try and get a line in to give him some fluids, but they just couldn’t get it in,” Corey said.
By the time Zeke reach Bendigo he had gone “down hill” and the decision was made to transfer him to the Royal Children’s Hospital.
“He died four or five times between Bendigo and Melbourne,” Corey said, remembering the panic and unknown of the horror situation.
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Life Support
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Exhausted from harvest hours, Corey who had stayed in Wycheproof and knowing his son was in the best care possible decided to stay the night in Wycheproof and head to Melbourne the next morning.
“At 6.30 the next morning the phone rang,” he said.
“It was Jazmin to tell me Zeke was on life support.
“I rang my boss, and all I could say was ‘he is on life support’ and my boss said ‘just go’ so I got in the car and went.”
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There are a lot of things about that day and the many days following that Corey will never forget. Hospitals will carry a whole new meaning for him now. The drive to Melbourne, the weather outside, where he parked his car, whether he stopped for lunch or not…all those things would have been a blur as he only had one thing on his mind, to see his son.
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Unforgettable Names
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Despite all that, Corey hasn’t forgotten the names of the very first people he met at the Royal Children’s Hospital, a legacy that has spurred him on to fund raise for the Good Friday Appeal.
“They were dieticians and their names were Flora and Heidi,” Corey said.
“I guess they must have spoken to us for about half an hour on what they had found in the tests and why Zeke was in hospital and then they told us he has Maple Syrup Urine Disease and there were only four people in Australia with it.”
Maple Syrup Urine Disease (MSUD) is a genetic disorder in which the body is unable to process certain protein building blocks (amino acids) properly.
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“All I wanted to do was see Zeke,” Corey recalls.
The extent of medical intervention which was required for Zeke became apparent to Corey when he was asked if he wanted to view a photo of his son before going to see him, to lessen the shock.
He didn’t. He just wanted to see his “little man”.
“I’ll never forget this tiny baby with cords, tubes, machines and monitors all making sure his brain wasn’t damaged, he was kept breathing and kept going.”
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Zeke remained on life support for four or five days before he slowly started to show his tenacious nature, first breathing by himself and by day six he had opened his eyes to see what all the fuss was about.
The nature of the condition Zeke has and the little information about it due to its rarity often meant that with every little step forward, there would be two back.
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Back Home
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After weeks in hospital and the machines and drips gradually coming off Zeke, he was allowed to return home to Wycheproof.
He had to have blood tests every two days and as Zeke got stronger the time between tests was extended.
There is no questioning that Zeke is a much loved little boy, he lives with his mum and brother in Melbourne and loves getting back up to Wycheproof with brother Jake to spend time with his dad Corey and Corey’s partner Laura Bish.
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Huge Event
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Early next year, a huge event organised by Corey and Laura will take Wycheproof by storm all in the name of Zeke and showing appreciation to the Royal Children’s Hospital Appeal.
The visits to hospital for little Zeke would be too numerous to recall. MSUD requires Zeke’s intake of protein to be painstakingly monitored. A rise in levels sends him back in hospital to be stabilised.
Almost two years on, Zeke’s family has had an entire education in a disease they never even knew existed before his birth.
Corey and Laura can reel off names of perscription-only formulas that I can hardly pronounce.
They have researched MSUD and know all there is to know about the disease, despite there not being a whole lot known about it.
“For Zeke at the moment, the only hope of a cure is a liver transplant,” Corey said.
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Special Formula
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But Corey and Laura say Zeke is a regular little two-year-old who loves getting into mischief, fighting with his big brother and watching his dad play cricket.
“It’s watching what goes into his mouth which is the tricky bit,” Corey said.
“As with most toddlers, just about everything goes into the mouth, but with Zeke, stealing a piece of chicken off someone’s plate could be life threatening.”
Laura described Zeke’s diet as “restricted vegan” which comes with its owns set of challenges.
“He is on a special formula which brings his protein levels down but then they found that the lack of protein in his diet was also affecting his health, he was also eating a diet that was too healthy,” Corey said.
“Since he has been allowed more sugar and carbohydrates, he seems to be staying our of hospital now for longer.”
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Big brother Jake has been along for the ride of medical uncertainty too, but Corey said they are still typical brothers.
“Jake really looks after Zeke and knows what he can and can’t eat,” he said.
Dealing with a rare disease comes with a large amount of unknown as research is continually undertaken and more is found out about it.
Having been through the roller coaster of the last two years, you would forgive Corey for taking it easy for a while, but that is not the case.
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Zeke’s Fundraiser
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Ever since meeting those two dieticians, Corey has been determined to give something back to the hospital. Enter “Zeke’s Fundraiser”.
Many fundraisers for ill children are understandably run to keep up with the costs associated with an illness, but not in this case.
All money raised through Zeke’s Fundraiser will go to the Royal Children’s Hospital so it can continue its amazing work.
“When you walk into the Royal Children’s it is a real eye opener,” Corey said.
“There are kids everywhere with a range of medical issues, so many much worse off than Zeke, and when you watch the work the doctors and nurses do there and the way the ensure the kids and their families are as happy as they can be, it really is amazing.”
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Laura said she could see the fundraiser was a very important goal for Corey, so together they started to make enquiries on becoming an official fundraiser for the Good Friday Appeal.
Once that approval came through, the emailing and contacting people began with some amazing results.
Corey and Laura haven’t put in just a token effort, they have taken on the cause like a full-time job.
Keeping people up-to-date with the latest occurrences in the fundraiser and securing auction items and entertainment for the main event has become part of their daily routine.
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There have been several events already held in Wycheproof to raise money for the appeal, but the big event will take place on March 29, 2013.
The event will include entertainment, a huge auction, performers, raffles, prizes and lots of fun to make it a memorable event.
“This way we can show everyone how much work, how much effort and care these Doctors, Dietitians, Nurses and Ambulance staff have put in to there daily work,” Laura said.
“Zeke’s Fundraiser for The Good Friday Appeal is here to help raise funds for the hospital for new equipment, machines, toys and anything that you can think of.
“Every single cent raised via the auctions, raffles, and even a percentage of the bar takings & door charge, will all be donated to the Appeal.”
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Star Power
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The Event is going to take place in Wycheproof at the Shire Hall. There will be some star power present with Marty Fields taking on MC duties and one of Australia’s funniest comedian’s, flying in from Sydney for the night, Irishman Brian Doyle bound to get the crowd laughing.
Blues duo Tony and Ella will perform, followed by budding country music star Jessica Jade Bruce!
The auction has drawn items from far and wide, one of the most exciting is a Wiggles skivvy signed by all four Wiggles.
The Wiggles extended their support of Zeke, granting him a request to meet the hugely popular children’s entertainers on Saturday 1st of December.
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Tickets go on sale on December 17, prices are at $350 per table of 10 or $40 each for a night not be missed.
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For more information and to keep up-to-date visit zekesfundraiser.org.au
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Thank-you to Rose Harris from the Buloke Times 4/12/12