When South Australian teenager Amelia Hocking had an excruciating headache that didn’t go away after a week, her concerned mum knew something was wrong.
The mum of five from Burra, in the state’s mid-north, said Amelia woke up one morning in “indescribable” pain – and that was only just the beginning of the nightmare.
“She pretty much woke up one day with a severe headache, but ‘headache’ doesn’t really do it justice,” Amelia’s mum Anndrea Hocking said.
“She says it’s an indescribable pressure that she gets in her head, unlike anything she’s ever had before.”
When the headaches first started, Anndrea said she “did all the usual things” – asked her daughter if she’d had enough water to drink, if she had slept badly and so on.
To make things worse, Amelia began to develop other painful symptoms that made her life a living hell: nausea, memory loss, dizziness, neck pain, numbness, blurred vision and loss of appetite.
The 15-year-old’s schooling became intermittent, as some days she was simply too ill to get out of bed, and she began to feel her quality of life slipping away.
“I was taking her to doctors, to the local hospital in Burra, and everything else was ruled out,” Anndrea said.
“One particular night she was in so much pain that we took her to Burra and one of the nurses said, ‘look, this has been going on for so long, you need to go to Adelaide.’
“It was about 10 o’clock at night and we drove the 200 kilometres to Adelaide to the Women’s and Children’s Hospital. A couple of weeks after that, after a series of MRIs, we got the diagnosis.”
From the beginning of her symptoms to a correct diagnosis took one excruciating year.
In September 2017, Amelia discovered she had a rare pineal cyst, also called a cystic brain tumour.
Currently, the cyst measures 12mm.
The cause for Amelia’s condition, officially called a Rare Symptomatic Pineal Lesion, is unknown.
The only way to fix the problem is to remove the cyst, but because of the cyst’s location in the centre of the brain, most surgeons deem the surgery too risky.
Since diagnosis, Amelia’s treatment has included the type of heavy-duty pain relief medication usually given to chemotherapy patients.
“Nothing really works,” Anndrea said. “To be honest, there’s nothing we can do. For three days straight recently, she was literally crying in pain.”
Desperate for help and seeking answers, Anndrea discovered a support group on Facebook.
“When Amelia was first diagnosed, I got online and started researching, because I’d never heard of this before,” she said.
“We reached out to these support groups, and they mentioned the neurosurgeon Dr. Charlie Teo at the Prince of Wales Hospital in Sydney, and the success rate that he’s had.”
So the Hockings consulted Dr. Teo, who said he was prepared to perform the surgery to remove the cyst.
Desperate to relieve Amelia’s suffering, the family is prepared to go ahead with the surgery, but it comes at a cost – around $100,000.
Without private health insurance, Anndrea said the financial strain, as well as the emotional strain of Amelia’s illness, was relentless.
“I can’t work; I’ve got to be around for Amelia all the time,” she said. “Financially, it’s exhausting, trying to raise money for the surgery.
“The other day someone said to me, ‘what if she doesn’t have the surgery?’ And I said, ‘there’s no what if. It has to be when’. If she doesn’t have the surgery, she could die.”
To help raise the funds, the family has launched a GoFundMe page.
“Despite the surgery risks, Amelia is desperate to relieve her debilitating pressure headaches and constant pain,” the fundraising page states.
“Whilst the growth rate of this lesion and consequences are unknown, Amelia’s greatest fears are how soon and what unrepairable damage this will cause.
“Please help Amelia’s hopes and aspirations return to her.
“Her greatest nightmare is that she has no future.”