But on Sunday, coping with the diagnosis became a little bit easier for the Albion Park family when they met other people on a similar journey to them.

Two-year-old Lyla has Neurofibromatosis, which affects 1 in every 2,500 births and causes tumours to grow on any of the 100 billion nerves in the body.

It can affect major organs and lead to blindness, bone abnormalities, deafness, disfigurement, learning difficulties and death.

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On Sunday, the Stott family along with about 60 other people dared to bare almost all, stripped down to their knickers and participated in the third annual Cupid's Undie Run at Kiama's Surf Beach.

People walked, danced and ran the 1.5km to the finish line and then celebrated with an after party complete with food, drinks and entertainment.

Race director Julia Szulerowski, and her daughter Jessica, live with the disease and said $6000 had been raised for the Children's Tumour Foundation.

"Everyone had a great time," she said. "The youngest runner was about 4-years-old and there were people aged in their 60s.

"People did the race in their undies, red t-shirts or tutus to do their bit for charity.

"Musician Ken Sullivan started the race by playing his guitar but was quickly overtaken.

"Kids were trying to beat adults and even the dogs had a good time.

"It was a nice, fun family day."

Mrs Stott said Lyla's diagnosis was a blow to their family.

"We tired to fall pregnant with for three years so Lyla was highly anticipated," she said. "We were told something was not quite right and our daughter would have a life-long condition. That was very upsetting.

"When we first found out about the diagnosis we had no idea what Neurofibromatosis was.

"We felt alone and like no one else understood what our family was going through.

"It means so much to find support and people in the same situation who can help guide us through this journey."

Lyla has a tumour near her spine, which could turn cancerous. She has to visit several medical professionals yearly to monitor her condition.

Ms Stott said it was great to have the support from others people living with the disease and for more people to learn about the condition.

"Our family and friends came out to support our daughter," Mrs Stott said.

"It was nice to meet Julia and Jessica, and I hope Lyla can form come great connections when she is older."

"It was emotional for us to come to the race but there is a lot of community support."