Four-year-old Lyla Stott is friendly, talkative and always happy. It's hard to imagine a nicer kid to be around.
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But before she was two years old her parents received a devastating diagnosis.
Lyla has neurofibromatosis (NF), one of Australia's most commonly diagnosed genetic neurological conditions.
Progressive and unpredictable, it causes tumours to form on nerves in the body, including the skin, brain, and spine.
These tumours can lead to physical differences, blindness, deafness, learning difficulties, chronic pain, and scoliosis.
In 10 per cent of people living with NF, these tumours can become cancerous. There is no cure and treatment options are limited.
Lyla's mum, Amanda, wanted to share her story for the Childrens Tumour Foundation this NF awareness month, as many people are unaware the condition exists.
"When we first found out about Lyla it was devastating, just what a complex condition it is and how many horrible things can come with it," she said.
"We couldn't find any positive stories or anything we could relate to, just worst-case scenarios and literature.
"We want to help any other family that's going through the process of finding out, so they realise there are people who have come out the other end and there is support out there, especially in our area."
Although Lyla's diagnosis has come with its own set of challenges, she has taken them all in stride.
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Amanda's biggest worries are similar to those of most mums.
The Albion Park mum, from NSW's south coast, worries when Lyla starts school next year other children might not accept her, or be unkind about her physical differences.
She also has worries that are more specific to NF.
"I also worry about her tumours - that they might grow, they might turn cancerous, or affect her mobility," Amanda said.
"It's a worry of all NF mums."
Her hopes for Lyla are the same hopes any mum has for their child - that Lyla grows up happy, confident in her skin and surrounded by people who love and appreciate her.
"The slogan for NF Awareness Month this year is 'bringing it out of the shadows'," Amanda said.
"We want to help bring it out of the shadows, to build a better awareness of NF and the ways it affects people, so Lyla and children like her will be understood and accepted."
Visit www.ctf.org.au/outoftheshadows to find out more about NF, and find out ways you can support children with NF and their families.
