Kyson Peters has neurofibromatosis type 1 (NF1), a genetic condition which impacts one in every 2500 Australians.

Single mum Sally Peters said during her pregnancy it was going to be a 50/50 chance of whether Kyson would inherit the condition from his father, who also has NF1.

But when he was born, he was like any other baby, with "soft skin, lots of dark hair and had a perfect little button nose".

After six months, however, baby Kyson had eight of the 10 symptoms NF1 sufferers could have.

"He had bowed-in legs, he had cafe-au-lait spots - they're just like birthmark type of things and have to be a certain size - had a large head and had short legs," Sally told the Leader.

He also started to get freckling in his groin and under his arms.

Fast forward six years and Kyson goes to various appointments either every week, or every second week.

"We're currently under NDIS because he's got numerous behavioural issues, so it is quite a tough time at the moment with the weekly or fortnightly appointments," Sally said.

"He's been complaining of back aches, he gets headaches, tummy migraines. At the moment he has actually been down with really bad headaches and they've made him vomit, they're like migraines."

Sadly, the condition doesn't subside after childhood. Kyson will suffer from it his whole life.

"As they grow, each year, it does become worse, so his last MRI they found bright spots on his brain, which at the moment are quite stable but they can change at any moment," she said.

"Just because he's okay today, it doesn't mean that's how he'll be tomorrow.

"It's quite daunting to me that that's how my son is and I don't know how he will be growing up."

Sally, who also has a four-year-old and a two-year-old, has had to put her studies on pause for a while to cope with the busy schedule of appointments.

"I'm studying at the moment, but sometimes I haven't even had the time to study for the last month," she admitted.

"I'm supposed to be doing 120 hours in work placements, but I'm trying to leave that for the last minute."

Despite the never-ending tough times, Sally said Kyson was in year 1 at Hillvue Public School, and his teachers were very impressed with his work.

"[Teachers] haven't said he's behind, so he's not a dumb child, he's quite clever," she said.

"He's quite average for everything he's been doing."

After a long while learning, he has also mastered the art of bike riding, which is very exciting news.

He and Sally wear their neurofibromatosis shirts often, to raise awareness of the condition.

"We do a lot of fundraising, I recently shaved my hair and got over $1000 for the Children's Tumour Foundation," she said.

This is her foundation of choice for raising money for awareness and research, and she encouraged locals to visit the website and support those who suffer from the condition.

Cupid's Undie Run also goes ahead every year for the same reason. It will be happening again this year but, rather than a fun run with thousands of people, it will go ahead in the form of numerous challenges.

Anyone wishing to be involved can visit https://www.cupidsundierun.com.au/