“If there was one symptom I could eliminate, what would it be?”
More than a year after being diagnosed with what was deemed an “inoperable” brain tumour and more than a month after The Examiner broke her family’s story, this was the question asked of Rachel Hayden during her second round of neurologist appointments.
“I couldn’t believe it, at first – one symptom,” she said.
“And I was like, ‘One symptom? Are you kidding? That’s not going to help me at all.’
“This is a disease and removing one symptom is not going to fix it, or fix all the issues it’s caused. I want it all gone.”
Rachel Hayden, her husband Andrew and their five kids know the meaning of suffering.
A few months into their fundraising efforts to organise potentially life-saving surgery to be performed by neurosurgeon Charlie Teo and the family still find themselves struggling on a daily basis.
“We had a bus we’d bought that we were planning for our retirement, but when Rachel was diagnosed we were like, ‘screw it, let’s just do it now,” Mr Hayden said.
“Now it’s a more stable thing than anything else in our lives.”
The “For Sale” sign out the front of the Haydens’ home is in stark contrast to the family aesthetic inside their home.
The family home is on the market at a much lower price than the area estimates, the Hayden’s have been forced to consider the van as a viable option for their family home in the future.
It’s a hard premise for anyone, but for Rachel, who regularly suffers issues such as sleepwalking, dizziness, nausea and excruciating cellulitis, it’s almost an impossible ask.
The response from the government, according to the Haydens, has been poor.
Rachel was forced to apply for Centrelink unemployment benefits in 2017, as her condition did not qualify her for disability insurance.
While that has now been remedied – she is now receiving a disability allowance – it’s too little, too late in the Hayden’s minds.
“It’s two years too late,” she said.
“If we had been accepted when we first applied for it, we would have been in a position to work out what we could do with everything.
“But in the mean time, while I’ve been forced to go through that system about three times at this point, we basically lost everything.”
Andrew, a contract trade worker, has had to forego work in order to look after the family and now has little chance of recovering his previous income.
“The work’s all dried up now. In this line, if you’re out for this long, that’s it. You can’t get back into it,” he said.
Which leaves the Haydens with the charity of the local community and others to help them get by.
Local member Tony Buti, as well as a number of non-profit organisaitons, has been instrumental in mobilising events to raise money.
Almost $25,000 has been raised through various fundraising efforts, going some way towards the $100,000 needed for the risky surgery.
While Dr Teo’s outspoken career has often drawn controversy, it’s the only opportunity the family can see to get their lives back on track and they still need help to get there.
For Ms Hayden, who has handled a large part of the fundraising herself, along with Andrew, it’s taking it’s toll.
“I had to stop everyone about a week ago and just say, ‘What’s happening to us?’” she said.
“I mean Andrew was planning all this fundraising stuff and running around trying to organise everything.
“He was there for me, caring for me, but I needed him to be my husband for a minute.
“So we stopped and we had a day to just enjoy ourselves, which is something I think we’ve forgotten to do lately.
“We need our family together, otherwise there’s no point to this.”
Fundraising efforts for the Haydens are continuing. Go to facebook.com/fightingforrachel for more details.