Zoe Connell can vividly recall the moment her family’s world “changed forever”.
It was Sunday December 17, 2023. Little Kealii was at an indoor playground in Darwin, running around — when suddenly he “went limp”.
“It was out of the blue,” Connell told 7NEWS.com.au.
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The then-16-month-old was dizzy and could no longer stand or control one side of his body.
“We knew straight away something wasn’t right, so we took him to the ED,” Connell said of herself and fiancé Dennis Jevdenijevic.
“We thought he was having a stroke. It was quite scary.”
Doctors initially thought it was a seizure but an MRI in January revealed the worst.
Kealii had a Grade II Ependymoma, a brain tumour.
Bursting into tears, Connell’s “heart sank” at the news.
“It felt like someone had just shot me straight in the chest,” she said.
The family of five was forced to uproot their life and move to Brisbane, where Kealii could undergo surgery to remove the mass.
There, doctors discovered the tumour had wrapped around his brain stem and nerves that control the face, eyes and ears.
The complication increased the risks from surgery, with surgeons saying there was a low chance of safely removing all the tumour without damaging the nerves or brain stem.
“Getting told this information broke Dennis and me,” Connell said.
“To think that our baby might not even make it to his second birthday was the hardest thing I have ever come to terms with.”
But Connell and Jevdenijevic knew the risks were worth it to try to give their baby boy a chance at beating the cancer.
“It was nine hours by the time they got him out (of theatre) and it was the longest time I’ve ever had to sit and wait anxiously to know if he was going to be OK or not,” Connell said.
A scan the next day, Jevdenijevic’s birthday, revealed doctors had completely resected the tumour.
“No one thought they were going to remove it all,” Connell said.
Kealii suffered damage to a facial nerve, paralysing part of his eye, cheek and voice box.
However, the 18-month-old does not let this stop him from playing with his two older siblings, Connell said.
“You wouldn’t think anything was wrong,” she said.
“He was just getting back to his normal, happy, bubbly self.”
Race against time
Although the family was elated the tumour had been removed, surgeons soon made them aware of the risk of Kealii’s tumour returning.
There were two main options for treatment: stereotactic radiation or a more targeted radiation called proton therapy.
The latter, doctors said, had a lower chance of damaging surrounding healthy brain tissue.
The catch? Proton therapy is not currently available in Australia.
To access it, Kealii’s family must travel to the United States and fork out more than $US190,000 ($A291,000) for treatment, along with financing accommodation for 10 weeks.
The Queensland Children’s Hospital has applied for Commonwealth assistance to get Kealii to Florida for the treatment — but it is subject to approval and time is running out.
Doctors said Kealii should start treatment before he reaches 12 weeks post-operation.
And with the youngster already six weeks post-craniotomy, the clock is ticking.
The family is fundraising to get their little boy the treatment that could change his life, and keep their family together in the process.
Between their personal savings and support from the community, they’ve “almost” hit the mark.
“We’re doing as best we can through the whole thing,” Connell said.
“I didn’t think we would get that much attention.
“Every bit counts.”
You can donate here to the efforts to get Kealii and his family to the US.