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The parents of an Australian toddler battling brain cancer have recalled the gut-wrenching moment they found out he had the disease, as they struggle to raise enough money for his life-saving treatment.

Kealii, the youngest of Darwin couple Dennis Jevdenijevic and Zoe Connell’s three children, was diagnosed with brain cancer late last year.

Despite undergoing a miracle surgery which saw the tumour completely removed, there is still a very high risk Kealii’s cancer will come back.

His parents were told there is one treatment option that could give their son a cancer-free childhood, but they only have three weeks left to raise the money for it.

The couple recalled the first moment that hinted something was wrong with little Kealii on December 17, 2023 – when he was just 16 months old.

Darwin toddler Kealii Jevdenijevic (pictured) underwent surgery on January 23 to remove a tumour that was wrapped around his brainstem

Darwin toddler Kealii Jevdenijevic (pictured) underwent surgery on January 23 to remove a tumour that was wrapped around his brainstem

‘Kealii was playing at an indoor playground and had this episode that led him to being unable to walk, stand, or control one whole side of his body,’ Ms Connell wrote on social media.

‘He went limp, super sweaty and couldn’t talk. We thought he would come good with some cuddles and sitting down, but he didn’t.’

Doctors thought Kealii may have had a seizure so kept him overnight at Royal Darwin Hospital.

‘The next day Kealii had a kink in the left side of his neck, when he would walk he would start to lean towards the left side and if he got up a fast pace he would almost fall over and have to get himself to slow down,’ Ms Connell said.

Kealii was referred for an emergency MRI on January 12. The test revealed the toddler had brain cancer.

‘Dennis and I sat down in a little waiting area and [our paediatrician] came in with another paediatrician. She asked us to come into another room that was a bit more private,’ Ms Connell said.

‘As soon as she said that my heart sank, I knew something was not right. 

‘I still remember the words clear as day, “I said to you during your appointment if something was wrong someone would tell you straight away, I’m so sorry but we did find something and Kealii has a brain tumour”. 

‘I bursted into tears, my heart broke. It felt like someone had just shot me straight in the chest, I wanted to vomit, my whole body started to shake and go into shock.’

While the surgery was successful, there is a very high chance Kealii's (centre) cancer will return due to his type of tumour

While the surgery was successful, there is a very high chance Kealii’s (centre) cancer will return due to his type of tumour

The family were told they needed to immediately rush to Queensland Children’s Hospital for ‘hope of surgical intervention’.

‘Zoe and I were informed the tumour had wrapped around Kealii’s brainstem and had began to drop into his spinal cord,’ Mr Jevdenijevic explained in a post to a Gofundme page.

‘Due to the tumour being in close proximity of his brainstem there were serious risks associated to the surgery, which were all risks we were willing to take helping our little boy.’

Ms Connell said the news Kealii’s tumour had wrapped around his brainstem ‘broke Dennis and I both’.

‘The pain we felt was like no other. 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,’ she said. 

‘I can’t actually explain the pain and heartache we both felt in that week. We both just walked around the hospital like mindless zombies while still trying to put on a brave face for our children.

‘Seeing my incredibly happy son who was still running around like nothing was wrong and being unaware of how much his life was about to change was breaking our hearts.’ 

Kealii's (pictured) parents were warned the best treatment to keep his childhood cancer-free is only available in America and he needs to begin within 12 weeks of his surgery

Kealii’s (pictured) parents were warned the best treatment to keep his childhood cancer-free is only available in America and he needs to begin within 12 weeks of his surgery

Kealii underwent surgery on January 23 and doctors were able to remove the entire tumour.

Ms Connell described seeing her son for the first time post-surgery, saying: ‘When we went in to see him he was hooked up to a heap of cords, had the EBD coming out of his head, and a breathing tube down his throat. 

‘It was such a confronting thing to see for our baby.’

The right side of Kealii’s face was left paralysed by the surgery.

‘Kealii now has difficulty with not being able to close his right eye requiring eye drops be applied every two hours, difficulty swallowing choking on fluids and has a much lower voice tone and speech partially impaired,’ Mr Jevdenijevic said.

Ms Connell added: ‘As sad as it makes me seeing him not be able to fully smile, eat or drink properly, or even talk properly, I’m also so grateful and blessed that the neurosurgeons here were able to remove the full tumour.’

A scan the following day confirmed Kealii was tumour-free but the family’s cancer victory was short lived.

Testing on the tumour had revealed it was a Grade II Ependymoma which Mr Jevdenijevic said is ‘renowned for returning’.

The family were given two treatment options, Stereotactic Treatment and Proton Therapy Treatment, and it was decided PTT was the best course as it would likely have less long term effects.

However, it is only available in America and Kealii needs to begin the treatment within 12 weeks of his last operation.

‘The costs for this treatment is in excess of $160,000 USD – this is not inclusive of flights or accommodation for the three months that Kealii is required to be in Florida for treatment,’ Mr Jevdenijevic said.

Kealii (pictured with his father) has just three weeks to begin his treatment in America but his family is still trying to raise the money

Kealii (pictured with his father) has just three weeks to begin his treatment in America but his family is still trying to raise the money

It has already been nine weeks since Kealii’s surgery.

The Queensland Children’s Hospital have applied for Commonwealth assistance but it could be up to ten weeks before they learn if they’ve been approved.

‘We aren’t usually a family to request support from friends and community like this but our little boy needs our help,’ Mr Jevdenijevic said.

‘Zoe was made redundant from her employment a week prior to us finding out Kealii had a brain tumour so we are currently dependent on a single income and want to keep our family together for this.

‘We are seeking any assistance we can to get Kealii and our family to Florida to start his treatment with the hope of curing his cancer and allowing him to continue living a quality life.’

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This post first appeared on Daily mail

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