Good Friday Appeal: Malu Hunt’s incredible determination after radical surgery

After months of daily seizures, Malu Hunt showed incredible determination in the face of an operation that saw his brain rewired.

After months of daily seizures, Malu Hunt showed incredible determination in the face of an operation that saw his brain rewired.

The youngest son of Erin Johnson and Morgan Hunt, and the face of this year’s Good Friday Appeal, the now two-year-old was diagnosed with infantile spasms – a rare type of epilepsy in children – 12 months ago.

Referred to the neurology department at The Royal Children’s Hospital in Melbourne, Malu’s care team discovered that the right side of his brain wasn’t developing properly and after finding little success through various medications, the neurology team offered one final solution: a hemispherotomy.

An extremely complex surgery, a hemispherotomy includes completely disconnecting one half of the brain, while leaving it inside the head.

As the only paediatric hospital in Victoria to take on this specific surgery, The Royal Children’s Hospital performs less than six hemispherotomies per year.

Seeking a cure for his seizures, Morgan and Erin made the tough decision to have their one-year-old undergo invasive brain surgery, knowing it would give him the best chance to a normal life.

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Erin Johnson and Morgan Hunt with their son, Malu, who is the face of this year’s Good Friday Appeal. Picture: David Caird

Thanks to the remarkable care at The Royal Children’s Hospital, Malu has been seizure-free since his surgery in July 2020. And while his condition will be managed regularly over his life, he will continue to visit the hospital until he graduates to adult care.

“It’s the incredible work of the Good Friday Appeal and the wider Victorian community which enables the hospital to continue their crucial work. When Malu went in for surgery we wanted to give him the best chance at life,” Erin explained.

“And the hospital has been with us every step of the way. He has now been seizure-free since his surgery in July, and we are thrilled by the progress he’s making.”

This year marks the milestone 90th anniversary for the Appeal – which since 1931, has been dedicated to fundraising for The Royal Children’s Hospital.

“The Appeal’s 90 year story is one of change and one of consistency,” the Appeal’s chairman and The Herald & Weekly Times’ Penny Fowler said.

“A story of innovation and evolution but also one of resilience and stability. With COVID, the Good Friday Appeal was certainly not alone in the need to pivot, to find new ways to do what had been done for years and to do so almost overnight.

“I believe the Good Friday Appeal endures and continues to grow after so long for two reasons: it is part of the fabric of our community, and Victorians are so incredibly generous. It’s all about the grassroots fundraising, everyone giving $5 or $10 or whatever they can.

“It is remarkable that over the last 90 years the Appeal has raised $381 million for the Royal Children’s Hospital.”

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Malu with his brothers at the Werribee Fire Station. Picture: Supplied

Malu spent the eve of Good Friday donning a firefighter outfit and helping volunteers test the hoses and sirens at the station. Picture: Supplied

In 2020, $18,200,000 was raised for the Good Friday Appeal, and to date more than $381 million has been raised since the Appeal began in 1931.

Executive Director Rebecca Cowan said she’s looking forward to celebrating the 90th year of giving for the kids.

“We understand how challenging the last 12 months have been for Victorians and are so appreciative of all this year’s generous donors, as well as those who support every year,” Ms Cowan said.

“From regional area managers and country towns, to families and individuals, long-term partners, fundraisers, and patients who have shared their story, the Appeal is beyond grateful for your generosity and we thank you from the bottom of our hearts.”

Malu also paid a visit to the Werribee Fire Station today, donning a firefighter outfit and exploring the trucks alongside his brothers Jarvie and Harlan, and helping volunteers test the hoses and sirens at the station.

The Werribee Bridge has been involved in fundraising for the Appeal since 1977 – and has raised more than a million dollars in that time – while the Country Fire Association (CFA) is in 2021 celebrating its 70th year of partnership with the Appeal.

“I was pretty chuffed to have the face of the appeal here,” Werribee CFA volunteer Peter May, a long-term fundraiser of the Good Friday Appeal, said.

“He’s a great kid who is just a bundle of energy. The kids are our future, and any money that goes towards helping them grow and develop is a worthwhile investment.”

You can donate to the Good Friday Appeal or find out what activities are happening in your local area here.