Why I’m doing Jeans for Genes’ Bake it Blue
We are fundraising for ADCY5 Research at Children's Medical Research Institute.
Grace was born in December 2015, our precious pink bundle of joy. We first noticed something was not quite right when Grace caught a virus at four months of age. She seemed to get progressively floppy and was failing to thrive. By six months of age, she was unable to sit up or hold her head up. When she was eight months old our world was turned upside down when we saw our Paediatrician and he informed us that Grace had Global Developmental Delay and that he had some real concerns.
Within the week we were sent as an urgent case to a Neurologist and what followed was lots of blood tests, two MRI’s of her brain and a spinal tap, which still didn’t lead us to knowing what was wrong with our daughter. For us as her parents living with such uncertainty and not knowing how to best help her was devastating, we felt so helpless. It was and is still an emotional rollercoaster for us all.
In March 2018 we were referred to the Westmead Children’s Hospital rare diseases Neurology team and it was then we did genome sequencing on Grace as the doctors thought her disorder maybe genetic. In June 2018 when she was 3.5 years old after waiting over a year, we received Grace’s Diagnosis of ADCY5 Familial Dyskinesia. We were so relieved to finally have some answers and to find out our daughter had a normal life expectancy and intelligence; however, a diagnosis has not led us to a cure!! and we have limited therapeutic options to help improve Grace’s quality of life.
Our Amazing Grace inspires us every day as she lives with ADCY5 Familial Dyskinesia. A rare genetic movement disorder with a prevalence of less than 1 in a million so she is certainly a rare “gem”, her variation of her disorder is even rarer with only one other person known to be affected in the world. Despite her struggles with significant speech and gross motor delays she always has the biggest smile on her face and loves and enjoys life.
Her disorder causes her to have multiple episodes of abnormal movements throughout the day that are triggered when she gets sick, tired, anxious, stressed, or frustrated. It also causes muscle fatigue making walking extremely difficult. She uses a wheelchair to enable her to get around. She also has low muscle tone and is unable to stand up by herself, sit unaided and impacts significantly on her speech.
Grace is an amazingly determined little girl who never gives up. Her determination and love for life is infectious and inspiring.
As Grace’s disorder is rare it’s so important that we fundraise for research and development into helping children like Grace. Your generous donation will help CMRI to develop therapies for Grace and others living with ADCY5, meaning they can reach their fullest potential and make a real difference in helping them to overcome their daily challenges.
We are fundraising for the work of Adjunct Research Scientist, Associate Professor Wendy Gold, who is group leader of the Molecular Neurobiology Lab at Children’s Medical Research Institute. She conducts a program of research spanning the fields of neurology, neuropathology, fundamental neuroscience, clinical chemistry, and pharmacology. The money raised will go towards one researcher studying Grace’s condition to explore the possibility of developing a gene therapy, or other treatment, to halt the progression of her condition with the aim of improving her function.
Please help in supporting Grace’s journey and we know she will continue to AMAZE us.
Please help us make a difference by donating to her page today.
Thank you!
My Impact
So far this year I helped provide...
832
Hours of research
For every $50 raised, one hour of research is funded
Funds raised over the years
Biggest Donor
Jean-ius Donor
$5,000
Thank you so much to my biggest supporter, Anonymous, for donating an incredible $5,000 to help fund vital research into curing children’s genetic diseases.
Thank you to our Sponsors
$106
Net Knight
Lovely to see you riding your bike along our street, go girl!
$53
Jennie Star
you’re a very special little girl Gracie, with so much love and support around you.
$42
Liam Jackson
$112
Matched Gift
Your donation has been doubled by our sponsors!
$112
The Cahill Family
We are sending Grace and her beautiful family our best wishes.
$56
Matched Gift
Your donation has been doubled by our sponsors!
$56
Cathy Priebbenow
$148
Matched Gift
Your donation has been doubled by our sponsors!
$148
Anonymous
$56
Matched Gift
Your donation has been doubled by our sponsors!
$56
Stone Family
Love from your friends at school Tommy and Lilly Stone xx
$106
Matched Gift
Your donation has been doubled by our sponsors!
$106
Francene Harrison
Love you Grace
$21
Matched Gift
Your donation has been doubled by our sponsors!
$21
Felicity Frankish
$106
Matched Gift
Your donation has been doubled by our sponsors!
$106
The Canete Family
$53
Matched Gift
Your donation has been doubled by our sponsors!
$53
Xuefan Hu
$53
Matched Gift
Your donation has been doubled by our sponsors!
$53
Corpus Christi Catholic School
We are all behind you grace from your friends in 3/6s at corpus
$1.52k
The Mallin Family
Lots of Love
$1.52k
Matched Gift
Your donation has been doubled by our sponsors!
$26
Matched Gift
Your donation has been doubled by our sponsors!
$26
Sue Mahony
We love you Grace
$454
Matched Gift
Your donation has been doubled by our sponsors!
$454
Jayne Wheen
All our love from Corpus Christi - Qkr collection
$21
Isla Wilson And Family
You are an inspiration Gracie! Keep on smiling!
$21
Matched Gift
Your donation has been doubled by our sponsors!
$74
Matched Gift
Your donation has been doubled by our sponsors!
$74
Courtney Sutherland
$27
Matched Gift
Your donation has been doubled by our sponsors!
$27
Tracy Spooner
You’re so amazing Grace and we are so excited to follow all your progress and look forward to seeing you walk one day we believe and pray! 🙏🏻
$320
Matched Gift
Your donation has been doubled by our sponsors!
$320
Corpus Christi Catholic School
Go Grace we are all behind you ! From our mufti day fundraiser and your amazing school community
$32
Matched Gift
Your donation has been doubled by our sponsors!
$32
Donna
With blessings to this awesome family.
$110
Matched Gift
Your donation has been doubled by our sponsors!
$110
Cran Mallin
Lots of Love
$110
Matched Gift
Your donation has been doubled by our sponsors!
$110
Sally Mallin
With Love
$11
Matched Gift
Your donation has been doubled by our sponsors!
$11
Canete Family
$56
Matched Gift
Your donation has been doubled by our sponsors!
$56
Liz Williams
Well done Gracie in inspiring us all day by day!
$21
Matched Gift
Your donation has been doubled by our sponsors!
$21
Belinda Camilleri
We love you Gracie ❤️❤️❤️
$158
Matched Gift
Your donation has been doubled by our sponsors!
$158
The Watts Family
All the very best, Grace. We are all cheering you on. Love William, Amaya, Fay & Jamie x
$211
Matched Gift
Your donation has been doubled by our sponsors!
$211
Collins Family
$56
Matched Gift
Your donation has been doubled by our sponsors!
$56
Penny Delmage
You go Gracie!! We’re all supporting you x
$110
Matched Gift
Your donation has been doubled by our sponsors!
$110
Anonymous
You truly are Amazing Grace!
$11
Matched Gift
Your donation has been doubled by our sponsors!
$11
Anonymous
$56
Matched Gift
Your donation has been doubled by our sponsors!
$56
Alexina & Family
All the best for the research and fundraiser Grace :)
$1.02k
Matched Gift
Your donation has been doubled by our sponsors!
$1.02k
Falinski Family
For amazing Grace & the most generous & loving family. We are all blessed to have you in our lives. Love Leigh, Nick & the 4 H’s xx
$200
Matched Gift
Your donation has been doubled by our sponsors!
$200
Anonymous
Dear Grace, I believe your wish will come true. Then, let’s run together! Your best friend, Eliana
$158
Matched Gift
Your donation has been doubled by our sponsors!
$158
Daniel, Sam, Gina, Ant Butcher
$158
Matched Gift
Your donation has been doubled by our sponsors!
$158
Clemmie And The Lawler Family Xx
$104
Matched Gift
Your donation has been doubled by our sponsors!
$104
Le Roux Family
Wishing you the best, Amazing Grace!!
$53
Matched Gift
Your donation has been doubled by our sponsors!
$53
Harper And Isabelle
Hi Grace, We love seeing your smiling face at school! Wishing you only the best xxx Love Harper and Isabelle
$158
Matched Gift
Your donation has been doubled by our sponsors!
$158
Anonymous
$53
Matched Gift
Your donation has been doubled by our sponsors!
$53
Anonymous
Go Grace!
$150
Matched Gift
Your donation has been doubled by our sponsors!
$150
Kellaigh Moffett
$200
Matched Gift
Your donation has been doubled by our sponsors!
$200
Liam Moffett
$21
Matched Gift
Your donation has been doubled by our sponsors!
$21
Anonymous
We love you Gracey!!
$32
Matched Gift
Your donation has been doubled by our sponsors!
$32
Stella Xx
$110
Matched Gift
Your donation has been doubled by our sponsors!
$110
Mike Wehrhahn
We're all behind you Grace as you continue to inspire us!
$158
Matched Gift
Your donation has been doubled by our sponsors!
$158
The Matheson Family
Dearest Grace, we hope you can soon run around with your brothers, and with Charlie, Ivy, Freddie and Polly xx
$104
Matched Gift
Your donation has been doubled by our sponsors!
$104
Genevieve Say
Go Gracie, we're all cheering you on!!! xxxx
$32
Matched Gift
Your donation has been doubled by our sponsors!
$32
Colleen Barrie
$56
Matched Gift
Your donation has been doubled by our sponsors!
$56
Pamela Farrar
$26
Matched Gift
Your donation has been doubled by our sponsors!
$26
Thomas K
You’re amazing Grace! Keep inspiring xx
$106
Matched Gift
Your donation has been doubled by our sponsors!
$106
The Shorts
Beautiful Grace, you’re an inspiration to us all! X
$26
Matched Gift
Your donation has been doubled by our sponsors!
$26
Cara Stepin
$110
Matched Gift
Your donation has been doubled by our sponsors!
$110
L Byrne
We love having Grace as part of our school community, she is an inspiration to us all. 💖 We wish you all the best with fundraising and research.
$53
Matched Gift
Your donation has been doubled by our sponsors!
$53
Jayney
Beautiful Gracie you are an inspiration to us all. Keep smiling little Lady 🥰🌸
$26
Matched Gift
Your donation has been doubled by our sponsors!
$26
Anonymous
You’re an inspiration….keep smiling
$21
C Herul Jackson
$21
Matched Gift
Your donation has been doubled by our sponsors!
$91
Matched Gift
Your donation has been doubled by our sponsors!
$91
Anonymous
We hope we can reach your goal!!!
$26
Matched Gift
Your donation has been doubled by our sponsors!
$26
Anonymous
$21
Matched Gift
Your donation has been doubled by our sponsors!
$21
Michelle Kellett
$1.5k
Poppy
With all my love Gracie
$1.5k
Matched Gift
Your donation has been doubled by our sponsors!
$5k
Matched Gift
Your donation has been doubled by our sponsors!
$5k
Anonymous
$1.5k
Matched Gift
Your donation has been doubled by our sponsors!
$1.5k
Anne Maly
For my darling Gracie, love Nana.
$5k
Matched Gift
Your donation has been doubled by our sponsors!
$5k
Anonymous
$10
Matched Gift
Your donation has been doubled by our sponsors!
$10
Anonymous
$53
Laura Hook
Go Grace! From Blythe x
$56
Anonymous
$520
Julia Lukas
You're a truly amazing girl Grace and so is your amazing mama. Love from the Lukas family and especially Johnny, Rose and our little Grace 💕
"Lovely to see you riding your bike along our street, go girl!"