Nikkita Dane and her two daughters live with Neurofibromatosis (NF).
She says it's a condition that's hard to pronounce, but even harder to live with.
"It's a significant health condition that can bring deafness, blindness, learning difficulties, short term memory problems, tumours and cancer," Nikkita explained.
"It's a chromosome disease which prevents stopping the growth of tumours in the body."
NF is a set of three complex genetic conditions that cause tumours to form on nerve cells throughout the body, including the brain and spine.
May is NF Awareness Month and one thing Nikkita, of NSW's South Coast town of Nowra, wants more people to know is that it's a common condition, affecting around 10,000 Australians, but it often goes undiagnosed.
"If more people are diagnosed, then more people can be treated properly, and more of us can be understood," she said.
Diagnosed at age six herself, Nikkita also wants to raise community awareness of the complexities and anxiety associated with living with NF.
"This is a condition that does not have a pause button, an off switch or reset," she said.
A paediatrician diagnosed her based upon six café-au-lait birthmarks and freckling. The flat, coffee-coloured birth marks are seen in just about everyone with NF1.
Her learning difficulties were a secondary indicator to confirm the diagnosis.
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It wasn't until Nikkita was diagnosed that her mum also learned she had NF1, and felt like the dots had finally connected as to why she struggled at school.
The condition affects individuals completely differently, with her two daughters Charlotte, 4, and Sophia, 5, being an example. Nikkita said they are her biggest heroes.
"Sophia isn't as affected by the condition as Charlotte is," she said.
"Sophia is doing fantastically at everything she does including schooling and she is such a social butterfly.
"Whereas Charlotte has a bit more going on. She has a feeding tube and Eosinophilic oesophagitis that are not related to NF and global development delay that affects her speech and motor skills.
"We also recently found out she had an optic glioma pathway (OGP)."
An OGP is a tumour that develops behind the eye and they occur in about 15 per cent of children with NF1, and usually between the ages of four and six.
OGPs are serious, but curable, brain tumors that arise in and around the optic nerve, and can cause vision loss.
NF doesn't have a cure, and the cornerstone of the condition is surveillance. This is because with many of the tumours being non-cancerous, treatments can often be more harmful than the presence of the tumour itself.
Nikkita currently lives with tumours present in her fingers, but is weighing up whether to remove them.
"Basically the chromosome that is missing means there are tumours growing all over the body and in the nerve junctions," she said.
"They can grow anywhere in the body, on the heart and brain. I have some on my hands at the moment, but I don't know if I should get them removed because when they are bumped, they hurt, but if they're removed there's the risk they might always come back anyway.
"So I weigh up whether I should just put up with it."
Nikkita said spreading awareness to find more in the community with the condition would help strengthen support.
"Awareness is so important, more of it will help parents understand why they aren't able to remember things or learn. Hopefully NF Awareness Month will also bring more resources to schools," she said.
One of the biggest fundraiser's for NF is the annual Cupid's Undie Run held on Valentine's Day, which supports the Children's Tumour Foundation. There is a run held in Kiama every year, but Nikkita hopes there will be one in the Shoalhaven next year.
For more information, visit the Children's Tumour Foundation: https://www.ctf.org.au/