Sarah Waters is determined her 3-year-old daughter Sadie will have memories of her.
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The bubbly Beechworth mum’s world imploded one ordinary Sunday morning in April when a huge, uncontrollable seizure hit her out of the blue in the kitchen of the family home.
They rushed straight to Wangaratta Hospital but she was discharged the same day.
The next day another terrifying seizure struck and Sarah recalls feeling her chest close in and a horrifying pain grip her brain.
“I thought I cried out for help and that I said to our (eldest) son Oli, ‘Go and get Dad’,” she recalls.
But the 10-year-old could make no sense of the garbled words as he watched his mother wracked by a tonic-clonic seizure.
The brave little boy called triple zero and Sarah was again rushed to Wangaratta and later transported to Royal Melbourne Hospital.
The minutes, hours, days and months since have been a blur of MRIs, EEGs, long and baffling consultations with neurosurgeons, absent (smaller) seizures and mind-numbing medication.
There have been more questions than answers as the news Sarah, 38, had an inoperable brain tumour slowly sank in.
Officially Sarah has a grade 2 glioma but it’s in a tricky spot in her brain, the family has been informed by a long line-up of neurosurgeons reluctant to touch it.
“After a week in Melbourne we came back home,” Sarah recalls.
“It feels like we’ve been back and forth 100 times but they’ve said there’s nothing more they can do.
“It’s in too hard a spot and so they won’t biopsy the tumour until it progresses.”
Now Sarah is desperately seeking life-saving surgery from renowned neurosurgeon Dr Charlie Teo.
She is sitting on the lounge at the Beechworth home she shares with her partner Andrew Kavanagh and their children Oli, 10, Archie, 7, and Sadie, 3.
Andrew, a landscaper, gazes lovingly across at Sarah – there’s worry etched into his face as he describes a nightmare five months.
The pair moved to the town two years ago seeking a tree change and Sarah works as a sexual assault counsellor with Wodonga’s Centre Against Violence.
She struggles most days to battle the nausea and overwhelming tiredness brought on by the heavy drug regime and ongoing seizures.
She’s not great with names and her memory is a bit muddled.
“The drugs knock you for six,” Sarah admits.
“After the ones I take at night, I’m hopeless – I’m a bit of a zombie to what I used to be.”
Sarah and Andrew met for a consultation with Dr Teo at his clinic in Sydney last week.
Their desperate hope was that he could offer the family something other than a terminal diagnosis.
The controversial medical hero is famous for operating on patients other surgeons have decided are beyond help.
During an hour-long consult he calmly and clearly told the couple “it’s a bad tumour in a bad place”.
“There was no sugar coating; he told us straight that it was on the side of the brain you don’t want it to be,” Andrew explains.
“He said the tumour wasn’t defined; it was hazy with cloudy edges and because of where it is, it makes the surgery trickier and riskier.”
Dr Teo also said he was prepared to take it out.
The four-hour surgery will cost $100,000 and there is a 15 per cent chance Sarah won’t be able to speak again and her long-term memory will be affected.
“They’re not great odds but they aren’t that bad either,” Andrew says.
“If we do nothing, it’s guaranteed to kill you eventually.
“You have to weigh up the risks ... it's possible Sarah is going to die before Sadie has memories of her mother.”
Sarah asked Dr Teo what he would do if it was one of his daughters.
“He said he would go ahead – even if it meant she couldn’t talk at least she would be here,” she recalls.
“I feel we’ve got to try – we’ve got to give it a shot.
Family and close friends are now rallying to raise the funds needed to support Sarah’s life-saving surgery.
On Wednesday, the Sarah Waters gofundme page had reached the halfway mark of its $100,000 target.
But the clock is ticking on a terrible time-bomb.
Fundraising efforts have intensified since the news Dr Teo was prepared to operate “tomorrow” once payment is made.
In the meantime the family has been humbled by the flood of support from within their close-knit community and across the entire country.
Donations have been accompanied by inspirational messages of hope and heartfelt kindness.
You have to weigh up the risks ... it's possible Sarah is going to die before Sadie has memories of her mother.
- Andrew Kavangah
Wonderful neighbours have pitched in with food, babysitting, school drop-offs and fundraisers.
It’s been a godsend as Andrew has been unable to work while he cared for Sarah and took her to endless appointments.
“You just feel completely powerless,” he admits.
“Considering we have only been here two years, though, we’ve had the most amazing support.”
But in the quiet of the evenings, when Sarah starts to tire and the drugs take a stronger hold on her mind, fear is never far away.
Telling their children has been the most gut-wrenching part of this whole ordeal.
“Oli got it straight away when we first told them in July,” Sarah recalls.
“He said, ‘Mummy why can’t they just take it out?’”
With that plea ringing in her ears, Sarah hopes this surgery will buy her the time to make a lifetime of memories with her family.
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