Lucas mum faces $40,000 bill for life-changing brain surgery

Amber Griffin had been suffering the crushing headaches and a host of strange symptoms since the birth of her son Kyrie, 2, but over the past 12 months they have grown more severe.

Following a bout of COVID, the pain in her head was so bad that doctors ordered a brain scan and it was then that doctors saw she had Chiari Malformation, a rare structure defect that causes pressure on the brain, pushing it downward into the spinal canal which restricts the flow of spinal fluid and impacts the spinal cord.

The only cure or relief is surgery.

Despite living with constant headaches, neck pain, numbness and tingling in her hands and feet, fatigue and tinnitus each day she has pushed through to be mum to Kyrie and Denver, 6, partner of Levi Cox, a casual worker at a local gym and a full time Masters of Teaching student.

She and Levi, who are both heavily involved with Beaufort Football Netball Club, are also planning to get married next March on their 10th anniversary.

"The last 12 months been tough, a lot of back and forth to Royal Melbourne (hospital) for scans and appointments," Mr Cox said.

"A lot of doctors dismissed the headaches because they can be caused by many different things, which was pretty deflating, but we just kept pushing to find the answer."

Ms Griffin struggled to find a specialist in the condition in Victoria, and after connecting with other Australians suffering the same condition she was referred to a Sydney neurosurgeon who specialises in Chiari Malformation.

"Once we caught up with him it has all happened so quickly," Mr Cox said. "He said it was a textbook Chiari Malformation and her symptoms clearly come from it ... and from there he asked when did we want to do the surgery."

The decompression surgery involves removing a section of bone in the back of the skull, and shrinking the cerebral tonsils, relieving pressure by giving the brain and spinal cord more room and restoring the flow of spinal fluid to the brain.

Ms Griffin could have had the operation in Sydney as early as this month, but with logistics and finances to organise it is now likely to occur on November.

"We thought even if she was lucky enough to get in, it might be six to 12 months before surgery but he turned around and said he could do it as early as September 27," Mr Cox said.

The surgery, performed in the private hospital system, will cost the couple around $40,000 in out of pocket costs - more than $9139 for the hospital room, $8356 for theatre, $250 in pharmacy costs, $300 for physiotherapy, $16,506 for the decompression surgery itself, $1000 anaesthetist's fee, $787 for prostheses/consumables and $4500 in flights and accommodation.

They also hope Amber's parents can travel with them to look after the children while she is in hospital, and for a few days after her discharge before she is cleared to travel back to Ballarat.

The family have been overwhelmed with the response to a Go Fund Me campaign to help them cover the costs associated with the surgery that her specialist says has a 90 per cent chance of reducing and fixing the problem.

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In just 24 hours, family, friends and strangers had donated more than $13,000.

"It was daunting putting ourselves out there like that but it's been incredible," Mr Cox said.

"It's really starting to sink in now. For the last couple of years she has probably downplayed it a bit - she goes about her daily stuff then comes home exhausted. People around us know what's going on but haven't understood the extent of it and now they see how serious it is everyone is extending their support."

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