Paige Simpson, 18, needs $6,000 a fortnight to stay alive

Paige Simpson had just celebrated her 18th birthday when she suddenly felt like her “face was falling off” and her life took a shock turn.

Paige Simpson had just celebrated her 18th birthday when she was suddenly rushed to hospital.

It was discovered the teenager had a Brain Stem Glioma — a cancerous tumour mostly found to impact children and young adults under the age of 20.

And what was meant to be a “straightforward” operation in November last year to remove the tumour, ended up being a “terrifying” seven hours.

“The tumour was wrapped around nerves going into her brain, making it extremely complicated and difficult,” Brisbane mum Carloyn Cross told news.com.au.

“We thought that was scary, but that was just the beginning.”

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Paige Simpson, 18, looking happy on the last day of 12 weeks of radiation therapy, but weeks later she would find out that treatment was unsuccessful in reducing the tumour. Picture: Supplied

Carloyn said her daughter realised something wasn’t right just a few weeks after her 18th birthday when she felt as though one side of her face was “falling off”.

“The following week it just got worse so I took her to the doctor.”

The GP put it down to Bell’s palsy, a muscle weakness that causes one half of the face to droop.

However, Carolyn wasn’t convinced, particularly when Paige’s face worsened after each passing week.

“I took her back to the doctor, he referred us to a neurosurgeon and after we got the results of an MRI, that’s when he called saying we need to go to the hospital straight away for the biopsy.

“We all cried so much when we found out what was happening, but Paige has been remarkably resilient.”

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In October 2020, Paige found out she had a brain stem glioma. Picture: Supplied

Paige then underwent 12 weeks of both radiation therapy and oral chemotherapy, but unfortunately neither treatment was successful in reducing the glioma.

Avastin — a tumour-starving (antiangiogenic) therapy — was the next step, with Paige being hooked to a drip every two weeks for 1.5 hours, along with more chemotherapy.

“This worked in reducing the size of the glioma, but, the glioma has also started fragmenting and is now in her spinal fluid, accumulating in her spine and the skin of her brain,” Carolyn explained.

Her mother Carolyn (pictured) said the glioma started fragmenting and is now in her spinal fluid, accumulating in her spine and the skin of her brain. Picture: Supplied

Now the family have been given the “awful” news that the next treatment doctors want to try is not on the Pharmaceutical Benefits Scheme in Australia, and that each injection is $6000 a fortnight.

“If she doesn’t get the injections (an immunotherapy called Keytruda) those little fragments will become bigger and they’re all throughout her spine and skin of her brain,” the heartbroken mother told news.com.au

“She won’t be with us for a long time if we don't get them.

“Of course we want to do everything we can to keep her alive, her life is only just getting to the good part, but the Australian Government doesn’t provide any financial benefit until we’ve contributed $70,000,” Carolyn said.

Doctors had to drill a hole in Paige’s skull to perform the biopsy. Picture: Supplied

As a result, Carloyn has started a GoFundMe page — something said she initially didn’t want to do.

“We have already exhausted our savings and I never wanted to do crowd funding and have people feeling sorry for us, especially because Paige just wants to remain so positive,” Carolyn said.

“But it’s got to a point where we can’t do it ourselves anymore and really did need help.”

Paige with mum Carolyn and her elder sister. She also has an older brother. Picture: Supplied

So far, more than $38,000 has been raised towards Paige’s medical expenses, with the family hoping to double that to $80,000.

Carolyn said any donation, big or small, is gratefully accepted, “so that we can hit our target and keep our beautiful Paige with us”.

She prays it will help in reversing “this hideous disease that is devastating our girl’s body”.

Originally published as Paige Simpson, 18, needs $6,000 a fortnight to stay alive