The thing Hannah Wilson wants more than anything is to be treated like everyone else.
The 11-year-old Wodonga girl, who wants to be a chef or digital illustrator when she grows up, was born with a genetic condition which causes tumours to form along nerves in her body.
Neurofibromatosis affects one in every 2500 Australians and is characterised by freckling on the skin, brown skin spots called café-au-lait marks and benign tumours.
Hannah and her brother Liam, 9, - who wants to be a gaming Youtuber - were both diagnosed with Neurofibromatosis type 1 before their second birthday.
The growths forming beneath Hannah's skin, including along her optic nerve, cause her constant pain and she's already had to undergo surgery to remove two tumours from her back.
But the most painful part of the condition for Hannah, is people's reactions.
"We're not that different to regular people," Hannah said.
"We can do the same things other people can do."
Their mother, Vanessa Engel, 29, said despite being more common than both Cystic Fibrosis and Multiple Sclerosis combined, few people have heard of Neurofibromatosis.
IN OTHER NEWS:
She believes the condition is less well-known because it doesn't present as what people think of as a 'traditional looking' disability.
The genetic condition can be invisible with tumours growing below the skin causing nerve pain, but it can also result in protruding tumours which often lead to unwanted comments.
"A lot of people question and judge and make their own assumptions," Ms Engel said.
"One of the reasons NF isn't as heard of is because we do live in the shadows, children and adults who have NF.
"I've heard a lot of cases of adults who don't like going outside, they don't like people looking at them, they wear a lot of baggy clothes."
Hannah said people have made comments in the past, which weren't nice.
"In year three and year four, people starting asking why I had so many spots," she said.
"You can't catch it...
"I didn't ask to have it."
Ms Engel said seeing her children learning to dislike something about themselves because of others' reaction was heartbreaking.
"That's the hardest part as a mum, she's starting to hate this condition," she said.
"She never asked to have it and people judge her because of it.
"I just want everyone to treat my children equally and I want awareness, just because they were born different doesn't mean they are different.
"I always tell them their condition doesn't define them and I make sure they grow up knowing that."
Unfortunately, there is no cure for the condition which can lead to cancer, deafness, blindness and physical difference.
"It's a progressive disease. It gets worse, it's never going to get better," Ms Engel said.
"I'm scared for their future, this can change at any time and that's what I'm most scared about."
Both Hannah and Liam have learning difficulties and scoliosis, while Liam also has been diagnosed with autism and ADHD.
Ms Engel said all the conditions were commonly linked with NF1.
"They're very body conscious and have a lot of anxiety around making new friends," she said.
Before her children were born Ms Engel knew nothing about Neurofibromatosis.
"I was scared," she said of the diagnosis.
"I didn't know what was going to happen. You think tumours and your thoughts go straight to cancer, you don't understand that it's not just cancerous tumours...
"I'd never heard of it which is why I'm trying to educate people because it's such a common condition and I wasn't aware of."
The trio are sharing their story during Neurofibromatosis Awareness Month in the hopes it will raise awareness and understanding within the community.
This year on May 17, World NF Awareness Day on May 17, Hannah and Ms Engel plan to shave their heads and Wodonga's Wodonga Water Tower will shine with blue and green lights.