Three Griffith children are at the start of a scary journey into the unknown, fighting against one of Australia's least talked about disorders.
Alex Nascimben, Stella McMillan, and Faith Carter suffer from neurofibromatosis type 1 (NF), a genetic condition which can cause attention deficit disorders and tumours to grow on nerves throughout their bodies.
The tumours can have a wide range of impacts, making NF unpredictable and hard to define.
The disorder has already had a huge impact on the lives of the three young Griffith children.
Alex, 12, had to undergo a 10-hour brain surgery to decompress his brain when he was three years old. He has also been diagnosed with ADHD, and shows many of the symptoms of autism.
Stella, 9, developed a calcium disorder as a result of NF. The disorder dissolved "three quarters" of her ulna, a major forearm bone. In December 2019, she underwent a world-first transplant operation, when doctors replaced her dissolved arm bone with a small bone from her leg.
Faith, 12, was born into a family of NF sufferers and has recently been diagnosed with autism and ADHD.
The disorder is progressive, so new symptoms can appear at any moment for the three children, who will likely be dealing with NF for the rest of their lives.
Across Australia, nearly one in 2,500 people are affected by NF, but sufferers in Griffith say support is nearly non-existent.
Living in the Riverina means the nearest specialised clinic for Alex, Stella, and Faith in NSW is Westmead Children's Hospital in Sydney.
Alex's mother, Erin Nascimben, says this has made an already difficult time even harder.
"I've found it really hard living rural," Mrs Nascimben said. "I knew no one else who had NF and you'd try and get support and just not get it."
"We have to go Sydney for all of our appointments, and when we have a complication we call and they say 'oh well just pop in and we'll see', but popping in is an eight hour drive away ... and to see a specialist is a three month wait.
"We've got the problem here and now, it's not something that can wait."
Stella's mother, Janelle O'Donnell, said she wasn't able to get her daughter into the Sydney clinic, and instead they had to travel to Melbourne.
"We were told they couldn't fit us in at Sydney because they were prioritising and Stella didn't fit even after her major surgery," Mrs O'Donnell said.
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"After a first worldwide procedure I thought we'd be a bit of a priority but apparently not ... it was devastating.
"You just want support and to know a little bit more about the condition and what to expect but we didn't get it.
"The unknown is the worst thing ... we have no idea what's ahead of us with Stella."
The three families say more awareness is needed to drive improvements in the support, which they said currently revolves around "throwing more medication at the problem".
We've got the problem here and now, it's not something that can wait.- Erin Nascimben, Alex's mother
Faith's mother, Stacey Carter, also suffers from NF, which causes her chronic migraines, epilepsy, mucle movement conditions and other issues.
She said the disorder is "day by day" for her, and has greatly impacted her life.
"I just want to get the word out there for NF sufferers because a lot of people don't know about it," Mrs Carter said.
Because of the wide range of different symptoms, NF sufferers often find it difficult to find support as they don't fall directly into the categories of more well-known disorders.
Mrs Nacimben said this was a major issue she found when they sought financial support for Alex.
The unknown is the worst thing ... we have no idea what's ahead of us with Stella.- Janelle O'Donnell, Stella McMillan's mother
"Alex doesn't fit any criteria," she said. "Yes he has all the traits of autism, but he's too affectionate so he's not considered autistic, so we don't get any funding for Alex."
"He has a low IQ and learning difficulties but we can't get any assitance because he doesn't fit a criteria ... there's no criteria for NF."
Faith, who started high school last month, said "there's no proper help" and sufferers like the members of her family need to be given "more stuff to help cope with it".
"I don't like seeing my mum having to be on so much medication," Faith said.
"We need to be given skills and strategies to help us deal with it."
Erin Nascimben is taking part in the Cupid's Undie Run to help drive awareness of neurofibromatosis.
The run, which has gone virtual this year, raises money for the Children's Tumour Foundation.
Mrs Nascimben's fundraising page can be found at https://www.cupidsundierun.com.au/my-fundraising/1341/erin-nascimben.
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