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Almost 11months ago Zeke was in the hands of the skilful Dr Bob Jones. In just over 12hrs, he became the recipient of a liver from a donor of similar age. He became Australia’s first MSUD patient to have this life changing surgery. In late December, Zeke was cured of Maple Syrup Urine Disease.
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Zeke’s bubbly personality is more pronounced than ever. For 3 years Zeke suffered through numerous hospital admissions, battling his condition as best as he could. He was well aware that he could not eat everything, and that he had to drink his formula to keep his protein levels down. Despite careful monitoring Zeke still needed the care of the Royal Childrens Hospital Melbourne. The wonderful Dr Joy and her medical team were instrumental in returning Zeke back to good health so he could go home. As hospital admissions became more frequent with several severe grand mal sezuires, which he had not had since he was only 7 days of age, it was clear Zeke’s condition was becoming unmanageable. Discussions turned to a possible cure; a liver transplant.
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In May 2013 Zeke was placed on the transplant list.
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Several months went by with no match. Testing began for a live transplant. Zeke’s mother Jazmin was found not to be a suitable donor due to her blood group not matching her sons’. Zeke’s father Corey however did match and date in the first week of January 2014 was booked to start the next step. However, a week later the phone call came through that a liver had been found.
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Post-transplant, Zeke’s development has been phenomenal. He now regularly attends pre-kinder and after school care, independently interacting in a class room environment which was virtually impossible prior to his transplant. His speech, though tainted from the seizures, has improved greatly through therapy and he speaks with more confidence, his vocabulary rapidly expanding. His food palate has also expanded, though he must avoid grapefruit as it interferes with the Tacro. Despite his restricted diet as a baby, he has no known food allergies which is a relief. He loves protein rich chicken and ham. And chocolate! No chocolate bar is safe when Zeke is in the house! Pop Harry showed him how to crack a pistachio nut open and they are devoured like they are going out of fashion.
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Its been a busy time adjusting to Zeke’s new medication regime, which is monitored and adjusted every fortnight in need be at the Royal Children’s Hospital. At 6 months post op, he was removed from all medication bar a few. He now just relies on his Tacro (anti-rejection) and a magnesium supplement several times a day to keep his liver functioning healthily. He continues to take his Kepra medication to help prevent any further seizures.
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Zeke also welcomed a new brother to the family in September, Ryder Harrison. Zeke shows such compassion and care helping look after Ryder and is a fantastic big brother, along with his elder big brother Jacob.
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Zeke’s journey has taken an incredible turn for the better this year. He celebrates his first MSUD-free birthday next month, and his Christmas lunch will be filled with his favourites – ham and custard!

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To continue our heartfelt thanks, Zeke’s Fundraiser will be back in 2015 in Wycheproof, fundraising through live music and auction. More details to come next month!