"It seems completely unfair that someone so small as Bertie would have to go through brain surgery. The words alone are frightening," Bertie's mum Jerusha.
Four-year-old Bertie was born with a rare arachnoid cyst in his brain. He had his first brain surgery at just three months old after being emergency airlifted from their home in Darwin to Melbourne's Royal Children's Hospital.
This was to be the first of ten gruelling surgeries the bubbly toddler would endure before his fourth birthday.
To help manage his condition, Bertie has countless medical appointments - OT, speech therapy, physiotherapy and paediatricians - as well as ongoing scans and tests.
"I'm a single mum and work full-time to give Bertie the best possible life," Jersusha said. "It's a constant juggle. I am forever watching him like a hawk whilst trying to balance being a fun-loving mum to my cheeky little boy."
Jerusha lives with constant fear and uncertainty and says every scan Bertie has fills her with dread. "If Bertie goes into the MRI machine longer than a certain time, I know instantly that we will have to drop everything and fly to Melbourne for emergency treatment."
Bertie's condition shows no warning signs and despite looking well, he can need urgent surgery then and there.
In February 2020, Bertie was rushed to hospital in Melbourne where he stayed for two weeks before returning to Royal Darwin Hospital for further treatment.
Just as he was settling back into life at home, an MRI changed everything. Bertie ended up back in Melbourne and did not come home for 10 long weeks as he endured four more brain operations.
Within months, he was readmitted for 12-hour emergency neurosurgery. Jerusha says the constant stress and upheaval takes its toll on them both.
"Bertie has missed out on so much. He loves to be outside exploring and is happiest being covered in mud and sand; we jokingly call him Dirty Bertie! In hospital he can’t do the things that a child his age should be doing," she said.
Amid the family’s ongoing pain and anguish, having Starlight in both Royal Darwin Hospital and Melbourne's RCH is vital to bring them moments of joy and happiness.
"The Captain Starlights have such a positive impact on Bertie, entertaining him with bubbles, laughter and songs. They really understand and respond to each child's individual needs," Jersusha says.
She recalls one occasion when the Captain Starlights - knowing much Bertie loves toy cars - set up a mini racetrack for him on the Starlight Express Room floor!
"Without Starlight, hospital would be lonely and hard work," his mum says. "The Starlight Express Room feels like a day trip out for Bertie; it's an escape from what happens on the ward."
Starlight also gives Jerusha vital respite from the relentless stress of hospital life. She says as the main carer of a child in hospital, it’s essential to be able have that mental break.
"As parents you are constantly worried seeing your child in pain while also trying to stay upbeat. You are tired, emotionally drained, haven’t eaten properly and are surviving on minimal sleep. So imagine when Captain Starlight walks into the hospital room and lights it up with joy. It takes the pressure off, like a huge weight off my shoulders."
Frequent time in hospital thousands of miles from home takes Bertie away from all that's familiar to him. Jerusha says it feels like his life is 'stop and start' which is hard for him to understand. Just as he starts making friends at daycare, everything changes and he has to start all over again.
"Even four years on, I think when will enough be enough and Bertie won't have to endure further surgery," she says.
Dealing with so much sadness, the role that Starlight plays is vital to help give Bertie the happiness he needs.
"Starlight turns painful and unhappy experiences into times of fun, hope and laughter. They help make a bumpy and sometimes scary road a more positive journey for us," Jerusha said.
