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27 July, 2022

Cute Shoot finalists share their stories

Research
Jeans for Genes
2022 page Cute Shoot new left right 278281d6c17dff4d88eebe5f4cf54eec
27 July, 2022

Cute Shoot finalists share their stories

Research
Jeans for Genes

Entering her daughter Layla into the Jeans for Genes Cute Shoot competition was the catalyst for first-time mum Lauren to open up about her family’s journey with genetic disease.

“It’s been really heart-warming going through the voting process, as it helped me open up to other people about what’s going on with Layla,” explains beauty therapist Lauren, 29, from Woonona in Wollongong. “At first, I didn’t want to talk about it, but promoting the competition to get votes helped me to talk about it a bit more which has been really good for my mental health.”

The Jeans for Genes Cute Shoot competition is a bit of fun for parents and fur-baby parents and also promotes awareness of the 1 in 20 children living with a birth defect or genetic disease. Layla will now feature on several giant billboards around Australia for Jeans for Genes Day on August 5th!

At nearly eight months old, Layla has an as-yet undiagnosed genetic condition. Her most outstanding feature is of course that beautiful smile, but she also 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.

Parents Lauren and Jarrod, 29, have just 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,” adds Lauren. “I never realised until I had Layla that it was such a high rate, that 1 in 20 kids [has a genetic condition], so it sort of makes you feel not so alone.

“Winning is very special for us. It was amazing to see so much support from our local community and just knowing people really care has been really heart-warming.”

The competition was equally as rewarding for Melissa, mum to two-year-old Annabelle who has CDKL5 – a genetic condition that causes seizures, developmental delay, and intellectual disability.

“I had a lot of fun doing the competition and I’m really happy that we raised a lot of awareness. There’s 1800 more people who have now heard of CDKL5 and my goal is for CDKL5 to become the most-known rare disease,” says Melissa.

Annabelle is one of about twenty kids in Australia with the condition which has left her legally blind, with limited hand-eye coordination, non-verbal, and unable to walk.

Her family is spearheading a CDKL5 alliance in Australia as part of the International Foundation for CDKL5 to give kids here easier access to developments and research as they arise.

“If we can get an alliance happening, we can hopefully open up [clinical] trials here,” she says.

A huge thanks to everyone who entered and voted! See all the amazing pics here.