Lyla Stott looks a picture of health playing on the swings with her parents.
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Flashing a cute smile, the brave three-year-old from Albion Park doesn't seem to have a care in the world.
But for half her life the courageous Lyla has lived with a genetic disorder called Neurofibromatosis (NF) - a condition that effects one in 2500 adults and children in Australia.
Lyla has NF1 which causes tumours to grow on nerves throughout the body, including the brain and spine.
Amanda Stott said as a result of her daughter's NF, Lyla suffers from mild scoliosis.
Mrs Stott and her husband Antony were "devastated" when Lyla was diagnosed with NF1 at 20-months-old.
"It was one of the hardest times of our lives. It was devastating," she said.
"It was very daunting because it is not a condition that has exact answers. There was a lot of what ifs, this may happen, this may happen. And there was a lot of wait and see. It was very hard.
"No parent wants their child to go through pain or to have a hard life, so when you have that prospect it was very hard to deal with."
It's also been hard on Lyla.
"In the last few months, Lyla noticed some of her bigger Café au lait spots while she was getting dressed. I told her they were her 'special spots' and have tried to paint them in a positive light, so she will hopefully grow up to love them," Mrs Stott said.
"Luckily, I have a couple of these spots, so now we look at 'Lyla's special spots' and 'Mummy's special spots' and we bond over them."
Luckily, I have a couple of these spots, so now we look at 'Lyla's special spots' and 'Mummy's special spots' and we bond over them.
- Amanda Stott
Lyla is much loved by her parents, who tried for "three long years" to have a baby.
"it was a very emotional journey but we were very excited when we found out that we were pregnant," Mrs Stott said.
"It was a great journey. We are very thankful to have had Lyla but it is just unfortunate that she has this condition.
"it is hard to tell when she is in real pain because she really can't express it to us.
"At the moment she is okay. She does have a tumor on her back next to her spine and there has been a couple of times when she has bumped that and I think that does cause her a little bit of pain.
"But apart from that, so far I think we've been lucky. We just have to monitor it and make sure that it doesn't change in the near future."
The Stotts are active members of the Children's Tumour Foundation (CTF) and their annual fundraiser, the Cupid's Undie Run - which helps generate funds towards NF research and support individuals and families living with NF in Australia.
Mrs Stott, who is eight months pregnant, said the family plan on supporting this year's virtual Cupid's Undie Run, which will run from February 14 to 28. Visit www.cupidsundierun.com.au to register and for more details.
"I am eight months pregnant at the moment so we are going to try as much as we can to participate in Cupid's Undie Run. We definitely going to do the run at home and just do our own little version at home, and then try and do as many challenges as we can," she said.
"I'm also going to cut my hair and donate it to a charity for wigs for children. So I'm raising money and awareness that way as well."
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Agron Latifi
Wollongong born and bred. I love reporting about the Illawarra region and have been doing it for more than 20 years. I've moved into sport recently after covering the education round for the last five plus years for the Illawarra Mercury. It's been a great pleasure.
Wollongong born and bred. I love reporting about the Illawarra region and have been doing it for more than 20 years. I've moved into sport recently after covering the education round for the last five plus years for the Illawarra Mercury. It's been a great pleasure.
