Malu Hunt the brave new face of the Good Friday Appeal

Malu Hunt’s incredible determination to overcome an operation that saw his brain intricately re-wired is why he is the new face of the Good Friday Appeal.

Face of the Good Friday Appeal Malu Hunt 2 playing at home. Picture: David Caird

It defies belief that you can detach half a toddler’s brain, and they will be left better off than before.

But when the mother-of-all electrical storms rolls in, threatening to steamroll their development, Erin Johnson and Morgan Hunt had no option left for their youngest son.

They had to trust that the recommendation for a rare and radical brain surgery at the Royal Children’s Hospital would preserve the life and future development of Malu.

“Even though the seizures were coming from one side, it affected the whole brain. It makes sense his half a brain was better than using his whole brain,” Ms Johnson said.

“It’s incredible. It still blows my mind.”

It took just eight months from the initial seizure that appeared days after his first birthday – episodes that looked like brief eye rolls – to Malu being wheeled in for a brain surgery.

The diagnosis of infantile spasms quickly became daily clusters of seizures. Even a trial-and-error roundabout of medications couldn’t quash the electrical storm in his brain.

Malu Hunt is the face of the Good Friday Appeal. Picture: David Caird

Neurosurgeon Wirginia Maixner said once scans had determined the extent of the malformation taking up the right side of Malu’s brain, they needed to act fast to separate this misfiring hemisphere from the healthy left side to cure his seizures.

“We know the trajectory for someone like Malu is downhill,” Ms Maixner said.

“But you come to surgery at a point, where if you stop the seizures and you get on with your medicines, then your trajectory starts paralleling a more normal child.”

It was a 12 hour surgery in late July to make the series of cuts in his brain that would keep the right side alive and firing, but cut off from the healthy left.

A hemispherotomy – performed twice a year at the RCH as a latch-ditch epilepsy treatment – effectively gives the child a stroke, as it takes away fine motor control and half a field of vision, while quarantine seizure activity.

But the brain’s ability to rewire is amazing. Six weeks after surgery, Malu started walking again. Next came the first words. He has learnt to ride his birthday trike, and is building up the confidence to chase his brothers in the backyard.

Malu with his mum Erin Johnson. Picture: David Caird

It’s with this determination that sees the two-year-old as the face of this year’s Good Friday Appeal, the annual drive to raise money for equipment, research and staff training at the RCH.

Malu will left with permanent vision loss in the left field of both eyes, and his left arm will most likely remain a helper hand.

Ms Johnson said the surgery has freed her son to start living again.

“We had absolute trust in the doctors and they didn’t let us down,” Ms Johnson said.

“I feel like since he’s surgery Malu’s come into his personality again.

“He likes to keep moving, being busy and being outside. He is just like his brothers, but things are going to be just that little bit harder for him as he grows up.

“He inspires us all.”

HELP SAVE THE LIFE OF A CHILD

Every time a child is wheeled into the operating theatre for brain surgery — always a lifesaving or life-changing exercise — the generosity of Victorians graces the procedure.

The Good Friday Appeal, in its 90th year, has raised more than $381m for new equipment, staff training and medical research at the Royal Children’s Hospital.

Neurosurgeon Wirginia Maixner said the neurosurgery and neurology departments had been grateful recipients of appeal donations, which allowed them to pursue the best for their patients.

In Malu Hunt’s case, surgery to disconnect the epilepsy-ridden half of his brain relied on an intraoperative MRI machine, which allowed him to have brain scans during his surgery without leaving the operating table.

The appeal further funded research looking at the genetic origins of brain dysplasias like Malu’s, as well as an upgrade of the neuronavigaton system that acts as a 3D GPS of the brain for surgeons.

“I actually couldn’t do any that I do, without those donations — all of them,” Ms Maixner said.

“We use the generosity of the public every time we operate.”

Support the Good Friday Appeal by going to: goodfridayappeal.com.au

Originally published as Malu Hunt the brave new face of the Good Friday Appeal