There is nothing quite as powerful to a parent as their child’s smile, but after Emilia was born, her mother Mary rarely saw a smile or eye contact.
“In the early days we never would see laughter or smiles,’’ Mary said.
Three-year-old Emilia is one of the faces of the 2023 Jeans for Genes campaign which raises funds for the vital work being done in the labs at Children’s Medical Research Institute.
“I started to notice signs that her development was a bit behind,’’ Mary said. “She was about four months old, and I noticed a lot of hand clasping and not opening her hands to reach out for rattles and things.’’
Mary took Emilia to a paediatrician who was also concerned and arranged for genetic testing. Emilia was diagnosed with a rare developmental disorder known as Rauch-Steindl syndrome. The features include developmental delay with speech and mild intellectual disability. As she gets older, she could struggle with weight gain, dental and skeletal issues. It was not inherited from her parents but is known as a “de novo’’ or random genetic variation that could happen to anyone.
“It was hard to deal with, but I just stayed positive, because obviously, with my background and career that I have in childcare, I felt I've seen this all before with all the children I have cared for, and I see them reaching those milestones. So why can't Emilia reach those milestones as well?’’
My Impact
So far this year I helped provide...
112
Hours of research
For every $55 raised, one hour of research is funded
Thank you to our Sponsors
$441
Community Kids St Helens Park
On behalf of all our families and Educators
$15
Anonymous
$26
Core Kids
$16
Anonymous
$11
Kirstie Borg
$11
Anonymous
$56
Jeans For Genes
Your donation has been doubled
$56
Josephine
$11
Jeans For Genes
Your donation has been doubled
$11
Anonymous
$56
Jeans For Genes
Your donation has been doubled
$56
Miss Kim
Thank you for sharing your family’s story ❤️
$32
Jeans For Genes
Your donation has been doubled
$32
Alison Carr
$11
Jeans For Genes
Your donation has been doubled
$11
Anonymous
$3
Jeans For Genes
Your donation has been doubled
$3
Anonymous
$21
Jeans For Genes
Your donation has been doubled
$21
Gabrielle Garea
$124
Jeans For Genes
Your donation has been doubled
$124
Exploring Tree Oran Park
$5
Jeans For Genes
Your donation has been doubled
$5
Rebecca Fiumara
$5
Jeans For Genes
Your donation has been doubled
$5
Jo Lane
$32
Jeans For Genes
Your donation has been doubled
$32
Erica Rouland
$55
Jeans For Genes
Your donation has been doubled
$55
Robyn Rudar
xxx
$11
Jeans For Genes
Your donation has been doubled
$11
Dworks Au Pty Ltd
$11
Jeans For Genes
Your donation has been doubled
$11
Lyle Sebastian
$21
Jeans For Genes
Your donation has been doubled
$21
Sarah Bleasdale
🩵🩵🩵
$16
Jeans For Genes
Your donation has been doubled
$16
Anna Benitez
$53
Jeans For Genes
Your donation has been doubled
$53
Jenica Zaniol
$42
Jeans For Genes
Your donation has been doubled
$42
Beck Bannister
$50
Jeans For Genes
Your donation has been doubled
$50
Nikki Henness
I am blessed to be one of Emilia's Early Education Educators, Watching her grow and reach for the stars each day is something i treasure. Keep Aiming for those Stars Emilia xx
$5
Jeans For Genes
Your donation has been doubled
$5
Anonymous
$11
Jeans For Genes
Your donation has been doubled
$11
Amy Stevens
$11
Jeans For Genes
Your donation has been doubled
$11
Elizabeth Turski
$260
Jeans For Genes
Your donation has been doubled
$260
Marilyn’s Needles And Threads
$211
Jeans For Genes
Your donation has been doubled
$211
Marilyn’s Needles And Threads
$6
Jeans For Genes
Your donation has been doubled
$6
John Milan
$32
Jeans For Genes
Your donation has been doubled
$32
Deleese Wilkinson
$55
Jeans For Genes
Your donation has been doubled
$55
Patricia Whyte
$40
Michelle Ross
We Love you beautiful princess 🩷
$40
Jeans For Genes
Your donation has been doubled
$54
Jeans For Genes
Your donation has been doubled
$54
Aunty Shaz
💙Emilia💙
$330
Jeans For Genes
Your donation has been doubled
$330
Community Kids St Helens Park
Raffle money donated so far from our families and educators.
$32
Jeans For Genes
Your donation has been doubled
$32
Natalie Signoretti
$37
Jeans For Genes
Your donation has been doubled
$37
Sara
I have loved watching you grow beautiful Emilia from your mummy's tummy to taking your first words 🤍
$56
Caleb Lemalu
Great cause Emilia!!! Cheering you on always x
$26
Brittany Staples
❤️❤️❤️
$56
Kylie Whyte
$56
Daniel, Danielle, Liam Lucas Sophie & Evie
❤️❤️❤️
$56
Denise Moretti
Little Emilia, I love your cheekiness and love for running around the trampoline edge. I love the way you make sounds on the swing and watching you grow. May the coming year be filled with more exciting milestones for you and your dedicated family. I love you lots little God daughter x
$211
Adam Whyte & Patricia Whyte
Me and Grand mum are only to glad to donate to this great cause.Dad and Grand mum love you so much Little princess 🤗 😘 ❤️ 💕 💗
$104
Sarah, Adam, Flynn, Harper & Frankie
❤️❤️❤️
$110
Coach Ben
$56
Kate Ward
$110
Kristy Harland
$56
Jessica Calarco
For a brave little girl ❤️
$91
Muriniti Family
Such a wonderful cause and a beautiful little girl.
$110
David Hodkinson
This is a great cause for critical research for beautiful kids like Emilia.
$110
Julie Chetcuti
Dear Mary, we are family and I’m happy to donate to a great cause. Emilia’s is such a gorgeous girl and is lucky to have you as her mother. Sending love and hugs your way xxx
$110
John Zekic
$26
Olivia Mcilveen
As one of the blessed people who watched Emilia take her first breaths in this world, I hope she continues to live a happy life full of love. I hope that medical research continues its advancements to help Emilia and many children just like her. Xo
$53
Kristy Ferris
$56
Jenny & Peter Grosvenor
💗 Beautiful Emilia 💗 stay strong & keep smiling. Happy to donate to a great cause to further medical research
$21
Tamara O'connor
Emilia is a beautiful little girl that I've had the pleasure of looking after since she started attending the Child Care Centre I work at. She's come so far and it's been so lovely to watch her grow, learn and overcome obstacles. I know it's not much, but I hope it helps contribute to the much needed medical research.
$10
Nicole Joyce
$63
Marilyn Rowe
$52
Danielle Medlicott
Anything to help little Emilia 🩷
$54
Adelaide Cooper
Emilia has been a beautiful addition to our family from the minute she was born -, looking forward to witnessing every step of her life
$52
Jenna Sheriff
I was lucky enough to help look after Emilia in her first years in childcare. Emilia you are such a beautiful and caring little girl who has developed and grown so much over the past few years. I know you will achieve so much and have such a bright and beautiful future ahead of you 💕
$42
Guy Lance
$110
Brett And Robyn
Emilia is adorable, and we hope the fundraising helps researchers with medical research around children.
$108
Sarah Deeth
Emilia you are a gorgeous little girl that I am so glad to have known since you were only 6 months old. You have grown in to a loving, cheeky, fun-filled girl who makes me giggle. You have achieved so many goals, learnt and grown so much. I know you have a bright future and I hope that your success story inspires other families of children with genetic conditions. Mary you are such a loving, patient, resilient Mum. You have many tough times but always stay hopeful for Emilia. I treasure all the time we have spent together with your gorgeous girl.
$56
Dani D.
Emilia is an amazing little girl who has a bright future ahead 💗 and you are such a wonderful mother, Emilia is so blessed to have you as her no.1 supporter! We are all here behind you if ever you need a helping hand or a friend to have a drink with! Xxx
$104
Adam Whyte
I'm only to happy to donate to this cause as it's for a great cause and also for my daughter Emilia
$53
Charmaine Whyte
$56
Dani Kennedy
💜💜💜
"On behalf of all our families and Educators"