All that Greymouth woman Brittany Kremers has wanted is to live a normal life and to look and feel normal, but she's lived with pain and facial disfigurement for two decades after being diagnosed with an aggressive cancer as a child.
Brittany hoped a prosthetic would mean she could lead a more normal life, but ACC has declined her claim to fund post-surgery treatment. She remains in painful medical limbo.
The 27-year-old spoke to Newshub National Correspondent Amanda Gillies.
Warning: This story contains confronting images
When I turned eight, mum and dad bought me a pink tracksuit from Melbourne Cash Fashion Store in Gisborne.
It was 1984, and this normally 'brown-haired, blue-clothed' girl was in pink heaven. Life was simple, easy, carefree - as it should be at that age.
Contrast this with the eight-year-old life of Brittany- who didn't have that carefree luxury.
When she was eight, on her dad's birthday - after her mum noticed a lump on the side of her face, she was diagnosed with an aggressive cancer called alveolar rhabdomyosarcoma, which spread to her mouth.
It was stage four and Brittany thought she was going to die.
"The biggest thing I remember was the smell," her mother Dawn Kremers said.
"It was black, it's what you imagine cancer to be - black, nasty."
"We got in the car and Brittany says to us, 'Have I got cancer mum?'
"We said, 'You do sweetheart'. She said 'Am I going to die?' We said, 'We hope not'."
It was 2006, and for the next year Brittany was in and out of hospital, undergoing chemotherapy, radiation treatment and surgery.
"On the first day, she was so nervous, she vomited in the gardens," said midwife Dawn. "That first Christmas, she spent it pretty much in a coma; she was that unwell. It was a rough, rough journey."
But the cancer went into remission, and in 2008 a relieved and jubilant Kremers family enjoyed "the best Christmas ever, lots of swimming, lots of happiness - yay we are through this".
Life was back to normal.
But the New Year arrived with a devastating blow - the cancer had returned with a vengeance.
"As a child, it was scary, very scary, upsetting, unknown," Brittany said. "I used to scream the ward down whenever I needed needles."
Her parents were told to take her home, make her comfortable with morphine, there was nothing more they could do.
No little girl should go through this, no little girl should face a cruel and brutal death. A new matching tracksuit should be the biggest deal in life.
But her parents refused to back down and refused to let their little girl die.
From their home on the rugged West Coast of the South Island, they investigated all possible solutions.
Eventually they found a specialist in Lower Hutt, who could remove her deadly tumour.
"He told us 'I'm not doing it to give her more time, I'm doing it to cure her", Dawn said.
But there was a catch. The 13-hour operation would save her life, but it would leave their little girl badly disfigured.
Her jaw and part of her skull would be removed, she would eventually lose her hearing and sight on one side. They were told there would be reconstruction "down the line".
"I just remember the pain and her hair falling out, that was heart-wrenching for me with her lovely beautiful long hair," said her mum, who has kept the hair in a box.
And then for a year this once vibrant young blond-haired girl would have an external metal brace attached to the side of her face so it could be centred. A screwdriver would be used to tighten it.
"It was horrible, people would stare, people would comment, the pain of it," said Brittany.
"And the discomfort and not being able to sleep on that side. The fact that it was for nothing in the end is devastating."
The toll has been brutal, both physically and mentally.
"My mental health is absolutely shit," Brittany said.
"I struggle doing daily things, I struggle getting out of bed half the time. The pain, the lack of energy, the discomfort. It's everything rolled into one. It's shit."
But the family held onto hope that a prosthetic jaw could be surgically attached, giving Brittany back a 'normal' look.
"It would be amazing, lovely, to function like a 'normal' person," Brittany said.
"One of my goals in life is to be a youth worker. And to be a youth worker you need to be able to talk to people and have people understand you."
And then the more personal goal, related to her partner.
"She said to me once, 'Mum, you know what I would like to do, I would like to be able to kiss Liam', which is something we all take for granted," said Dawn.
The prosthetic surgery, they believed, would be completed by early 2022. What they didn't expect was to be told by medical staff in December 2021 that there was no funding available to do it.
They were broken, devastated. But a friend threw them a lifeline, setting up a Givealittle page and the donations began to roll in - eventually $282,000 was raised.
The Kremers were overwhelmed and humbled.
"That was amazing. It made me realise that people do care out there," smiled Brittany. "It is genuinely a nice feeling".
Her family prepared a plan to get the surgery underway.
But another blow was delivered, this time by an Auckland consultant. Accident Compensation Corporation (ACC) needed to get on board, because Brittany required a lifetime of follow-up treatment, and it wasn't going to be cheap.
The money already raised wouldn't cover long-term care. So, the family submitted a treatment injury claim to ACC - and waited nine months for a reply.
Their claim was eventually declined, they were told the cancer had caused the deformity, not the treatment. The Kremers were both gob-smacked and heartbroken.
"It's just down to bullshit basically," said Brittany.
"It's just down to money, and politics and the health system - shit that it shouldn't have come down to in the first place. But here I am."
In a statement, ACC told Newshub the medical evidence found Brittany's injuries were either necessary to treat her recurrent tumour or were an ordinary consequence of treatment for her condition.
"As such, Brittany's injuries did not meet the criteria for a treatment injury, and we were unable to accept her claim."
But "we recently received new medical evidence related to Brittany's treatments and have subsequently asked two specialists - the original expert who gave us advice and another specialist - to reconsider her claim".
ACC couldn't set a timeframe on when a decision would be made.
"We are working as hard as we can to reach a decision on this claim as soon as possible."
Brittany told Newshub it can't come soon enough. And she's praying it's in her favour.
"At the moment, life is low and rubbish. Lots of mood swings and I don't do much outside of the house, I don't have many people I hang out with, people don't know how to act around me," she said.
"But I want to get out there and help young people in the world. I want to do good in the world."
But she can't do that right now. "You can't function like this, and you can't live like this".
