Little Layla McCann is the face of Jeans for Genes

As the 2022 winner of the Jeans for Genes Cute Shoot, Layla's tiny face features on eight giant billboards across the nation. But today it was all about the Illawarra for the Woonona mum and daughter.

Layla and her mum Lauren made their first visit in an official capacity - to St Columbkille's Catholic Primary School.

Read more: 'It was a choice': Unvaxed nurse's fight to get her job back fails

Nationwide the annual Jeans For Genes Day was celebrated on Friday but thanks to a family connection, the McCanns were special guests at the Corrimal school.

"It's all about raising awareness," Lauren said. "I spoke at the assembly and hopefully helped people understand a little about what's behind Jeans for Genes."

For first-time parents Lauren and husband Jarrod, genetic disease has been a steep learning curve.

Even after almost eight months, Layla's condition is yet to be diagnosed. She is, however, thanks to skilled medicos and round-the-clock dedication from Lauren and Jarrod, hitting milestones.

"I spend all my time with her plus she has an occupational therapist but the doctors are very pleased with her," Lauren, a beauty technician, said.

"The idea was to take maternity leave and then work part-time but as she has a feeding tube, I need to be with her.

"I can't just take her to daycare," Lauren said.

Read more: 'Hi Mum', you're about to get scammed

Layla has an array of symptoms that have so far stumped geneticists, including short stature, short long bones, renal dysplasia, pale retinas, failure to thrive and developmental delays.

The McCanns have sent away for exome DNA sequencing in the hopes of diagnosing her genetic condition to give them some insight into her future.

"I knew about Jeans for Genes from wearing jeans at school and making a donation, but until I had Layla, I wasn't really aware of how many genetic disorders are out there - and especially how many are undiagnosed.

"So that really interested me and made me feel a lot stronger towards Jeans for Genes," Lauren said.

"I never realised until I had Layla that it was such a high rate, that one in 20 kids [has a genetic condition], so it sort of makes you feel not so alone.

Students and staff at St Columbkilles donned the denim today and will continue raising money to support the cause.

There's also another timely link with Australia's athletes celebrating all sorts of success at the Commonwealth Games.

Layla's great aunty is Wollongong's beloved marathon superstar, the late Kerryn McCann. She won Games gold in 2002 and 2006.