Malu is the face of the 90th Good Friday Appeal. The gorgeous two-year-old is up and running again after he had surgery to disconnect one half of his brain to minimise the impact of debilitating seizures.
Chasing after his brothers with a beaming smile on his face, two year old Malu Hunt is bursting with energy as he wanders around his backyard.
Looking at him now, you’d never know that he’s adapting to his new life with half a functioning brain.
At 12 months of age Malu was diagnosed with infantile spasms – a rare type of epilepsy in children.
Referred to the Neurology department at The Royal Children’s Hospital, Malu’s care team discovered that the right side of his brain was not developing properly.
Finding little success through various medications, options to minimise the impact this condition was having on his developing brain were running out, so the RCH 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.
The only paediatric hospital in Victoria to take on this specific surgery, the RCH performs less than six hemispherotomies per year.
After months of medications, tests and anxiously seeking a cure for his seizures, Malu’s parents, Morgan and Erin, were faced with the difficult decision – whether or not to have their one-year-old undergo invasive brain surgery.
Considering all possible outcomes, they came to the decision that a hemispherotomy would give their toddler the best chance of a normal life, without the debilitating seizures that were impacting his development.
On the day of his surgery, Erin and Morgan handed Malu over to the RCH Neurosurgery team.
While the neurosurgeons worked tirelessly for 12-hours, creating incisions to disconnect the right hemisphere in Malu’s brain, his family waited for what felt like the longest day of their lives.
Just after 9.00pm, Erin and Morgan received the news that Malu’s surgery had gone well and the troublesome side of his brain had been successfully disconnected.
Malu spent the next four weeks at the RCH, working with the hospital’s rehabilitation team.
Expected to make slow, steady progress, Malu exceeded his doctors’ expectations and began walking again less than one month after surgery.
With the right side of the brain controlling the left side of the body, Malu had partial paralysis on his left side but is gaining strength and confidence and is hitting developmental milestones.
Thanks to the incredible care at the RCH, Malu has been seizure-free since his surgery in July 2020. While his condition will be managed regularly over his life, he will continue to visit the RCH until he graduates to adult care.
Thanks to your generous support, we can make a difference to children like Malu and support world-leading care at the RCH.
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.”
Walking into the doctor’s office, Nicole and Matthew Verrocchi could never have imagined that their two-year-old son Rafael was about to be diagnosed with cancer.
Aurora adds to Hospital’s AppealMeet the Patients
To mark the 90th Good Friday Appeal, we are calling for people to share their stories, like Aurora Fei, who celebrated her 4th birthday while in hospital for cancer treatment.