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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!

Latest donations

$ 105.50

Net Knight donated at 4 months ago

"Lovely to see you riding your bike along our street, go girl!"

$ 52.75

Jennie Star donated at 4 months ago

"you’re a very special little girl Gracie, with so much love and support around you."

$ 42.20

Liam Jackson donated at 4 months ago

$ 112.32

Matched Gift donated at 4 months ago

"Your donation has been doubled by our sponsors!"

$ 112.32

The Cahill Family donated at 4 months ago

"We are sending Grace and her beautiful family our best wishes."

$ 55.92

Matched Gift donated at 4 months ago

"Your donation has been doubled by our sponsors!"

$ 55.92

Cathy Priebbenow donated at 4 months ago

$ 147.70

Matched Gift donated at 4 months ago

"Your donation has been doubled by our sponsors!"

$ 147.70

Anonymous donated at 4 months ago

$ 55.92

Matched Gift donated at 4 months ago

"Your donation has been doubled by our sponsors!"

$ 55.92

Stone Family donated at 4 months ago

"Love from your friends at school Tommy and Lilly Stone xx"

$ 105.50

Matched Gift donated at 4 months ago

"Your donation has been doubled by our sponsors!"

$ 105.50

Francene Harrison donated at 4 months ago

"Love you Grace"

$ 21.10

Matched Gift donated at 4 months ago

"Your donation has been doubled by our sponsors!"

$ 21.10

Felicity Frankish donated at 4 months ago

$ 105.50

Matched Gift donated at 4 months ago

"Your donation has been doubled by our sponsors!"

$ 105.50

The Canete Family donated at 4 months ago

$ 52.75

Matched Gift donated at 4 months ago

"Your donation has been doubled by our sponsors!"

$ 52.75

Xuefan Hu donated at 4 months ago

$ 52.75

Matched Gift donated at 4 months ago

"Your donation has been doubled by our sponsors!"

$ 52.75

Corpus Christi Catholic School donated at 4 months ago

"We are all behind you grace from your friends in 3/6s at corpus"

$ 1.52k

The Mallin Family donated at 4 months ago

"Lots of Love"

$ 1.52k

Matched Gift donated at 4 months ago

"Your donation has been doubled by our sponsors!"

$ 26.38

Matched Gift donated at 4 months ago

"Your donation has been doubled by our sponsors!"

$ 26.38

Sue Mahony donated at 4 months ago

"We love you Grace"

$ 454

Matched Gift donated at 4 months ago

"Your donation has been doubled by our sponsors!"

$ 454

Jayne Wheen donated at 4 months ago

"All our love from Corpus Christi - Qkr collection"

$ 21.10

Isla Wilson And Family donated at 4 months ago

"You are an inspiration Gracie! Keep on smiling!"

$ 21.10

Matched Gift donated at 4 months ago

"Your donation has been doubled by our sponsors!"

$ 73.85

Matched Gift donated at 4 months ago

"Your donation has been doubled by our sponsors!"

$ 73.85

Courtney Sutherland donated at 4 months ago

$ 27

Matched Gift donated at 4 months ago

"Your donation has been doubled by our sponsors!"

$ 27

Tracy Spooner donated at 4 months ago

"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! 🙏🏻"

$ 319.66

Matched Gift donated at 4 months ago

"Your donation has been doubled by our sponsors!"

$ 319.66

Corpus Christi Catholic School donated at 4 months ago

"Go Grace we are all behind you ! From our mufti day fundraiser and your amazing school community"

$ 31.65

Matched Gift donated at 4 months ago

"Your donation has been doubled by our sponsors!"

$ 31.65

Donna donated at 4 months ago

"With blessings to this awesome family."

$ 109.72

Matched Gift donated at 4 months ago

"Your donation has been doubled by our sponsors!"

$ 109.72

Cran Mallin donated at 4 months ago

"Lots of Love"

$ 109.72

Matched Gift donated at 4 months ago

"Your donation has been doubled by our sponsors!"

$ 109.72

Sally Mallin donated at 4 months ago

"With Love"

$ 10.55

Matched Gift donated at 4 months ago

"Your donation has been doubled by our sponsors!"

$ 10.55

Canete Family donated at 4 months ago

$ 55.92

Matched Gift donated at 4 months ago

"Your donation has been doubled by our sponsors!"

$ 55.92

Liz Williams donated at 4 months ago

"Well done Gracie in inspiring us all day by day!"

$ 21.10

Matched Gift donated at 4 months ago

"Your donation has been doubled by our sponsors!"

$ 21.10

Belinda Camilleri donated at 4 months ago

"We love you Gracie ❤️❤️❤️"

$ 158.25

Matched Gift donated at 4 months ago

"Your donation has been doubled by our sponsors!"

$ 158.25

The Watts Family donated at 4 months ago

"All the very best, Grace. We are all cheering you on. Love William, Amaya, Fay & Jamie x"

$ 211

Matched Gift donated at 4 months ago

"Your donation has been doubled by our sponsors!"

$ 211

Collins Family donated at 4 months ago

$ 55.92

Matched Gift donated at 4 months ago

"Your donation has been doubled by our sponsors!"

$ 55.92

Penny Delmage donated at 4 months ago

"You go Gracie!! We’re all supporting you x"

$ 109.72

Matched Gift donated at 4 months ago

"Your donation has been doubled by our sponsors!"

$ 109.72

Anonymous donated at 4 months ago

"You truly are Amazing Grace!"

$ 10.55

Matched Gift donated at 4 months ago

"Your donation has been doubled by our sponsors!"

$ 10.55

Anonymous donated at 4 months ago

$ 55.92

Matched Gift donated at 4 months ago

"Your donation has been doubled by our sponsors!"

$ 55.92

Alexina & Family donated at 4 months ago

"All the best for the research and fundraiser Grace :)"

$ 1.02k

Matched Gift donated at 4 months ago

"Your donation has been doubled by our sponsors!"

$ 1.02k

Falinski Family donated at 4 months ago

"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 donated at 4 months ago

"Your donation has been doubled by our sponsors!"

$ 200

Anonymous donated at 4 months ago

"Dear Grace, I believe your wish will come true. Then, let’s run together! Your best friend, Eliana"

$ 158.25

Matched Gift donated at 4 months ago

"Your donation has been doubled by our sponsors!"

$ 158.25

Daniel, Sam, Gina, Ant Butcher donated at 4 months ago

$ 158.25

Matched Gift donated at 4 months ago

"Your donation has been doubled by our sponsors!"

$ 158.25

Clemmie And The Lawler Family Xx donated at 4 months ago

$ 104

Matched Gift donated at 4 months ago

"Your donation has been doubled by our sponsors!"

$ 104

Le Roux Family donated at 4 months ago

"Wishing you the best, Amazing Grace!!"

$ 52.75

Matched Gift donated at 4 months ago

"Your donation has been doubled by our sponsors!"

$ 52.75

Harper And Isabelle donated at 4 months ago

"Hi Grace, We love seeing your smiling face at school! Wishing you only the best xxx Love Harper and Isabelle"

$ 158.25

Matched Gift donated at 4 months ago

"Your donation has been doubled by our sponsors!"

$ 158.25

Anonymous donated at 4 months ago

$ 52.75

Matched Gift donated at 4 months ago

"Your donation has been doubled by our sponsors!"

$ 52.75

Anonymous donated at 4 months ago

"Go Grace!"

$ 150

Matched Gift donated at 4 months ago

"Your donation has been doubled by our sponsors!"

$ 150

Kellaigh Moffett donated at 4 months ago

$ 200

Matched Gift donated at 4 months ago

"Your donation has been doubled by our sponsors!"

$ 200

Liam Moffett donated at 4 months ago

$ 21.10

Matched Gift donated at 4 months ago

"Your donation has been doubled by our sponsors!"

$ 21.10

Anonymous donated at 4 months ago

"We love you Gracey!!"

$ 31.65

Matched Gift donated at 4 months ago

"Your donation has been doubled by our sponsors!"

$ 31.65

Stella Xx donated at 4 months ago

$ 109.72

Matched Gift donated at 4 months ago

"Your donation has been doubled by our sponsors!"

$ 109.72

Mike Wehrhahn donated at 4 months ago

"We're all behind you Grace as you continue to inspire us!"

$ 158.25

Matched Gift donated at 4 months ago

"Your donation has been doubled by our sponsors!"

$ 158.25

The Matheson Family donated at 4 months ago

"Dearest Grace, we hope you can soon run around with your brothers, and with Charlie, Ivy, Freddie and Polly xx"

$ 104

Matched Gift donated at 4 months ago

"Your donation has been doubled by our sponsors!"

$ 104

Genevieve Say donated at 4 months ago

"Go Gracie, we're all cheering you on!!! xxxx"

$ 31.65

Matched Gift donated at 4 months ago

"Your donation has been doubled by our sponsors!"

$ 31.65

Colleen Barrie donated at 4 months ago

$ 55.92

Matched Gift donated at 4 months ago

"Your donation has been doubled by our sponsors!"

$ 55.92

Pamela Farrar donated at 4 months ago

$ 26.38

Matched Gift donated at 4 months ago

"Your donation has been doubled by our sponsors!"

$ 26.38

Thomas K donated at 4 months ago

"You’re amazing Grace! Keep inspiring xx"

$ 105.50

Matched Gift donated at 4 months ago

"Your donation has been doubled by our sponsors!"

$ 105.50

The Shorts donated at 4 months ago

"Beautiful Grace, you’re an inspiration to us all! X"

$ 26.38

Matched Gift donated at 4 months ago

"Your donation has been doubled by our sponsors!"

$ 26.38

Cara Stepin donated at 4 months ago

$ 109.72

Matched Gift donated at 4 months ago

"Your donation has been doubled by our sponsors!"

$ 109.72

L Byrne donated at 4 months ago

"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."

$ 52.75

Matched Gift donated at 4 months ago

"Your donation has been doubled by our sponsors!"

$ 52.75

Jayney donated at 4 months ago

"Beautiful Gracie you are an inspiration to us all. Keep smiling little Lady 🥰🌸"

$ 26.38

Matched Gift donated at 4 months ago

"Your donation has been doubled by our sponsors!"

$ 26.38

Anonymous donated at 4 months ago

"You’re an inspiration….keep smiling"

$ 21.10

C Herul Jackson donated at 4 months ago

$ 21.10

Matched Gift donated at 4 months ago

"Your donation has been doubled by our sponsors!"

$ 90.73

Matched Gift donated at 4 months ago

"Your donation has been doubled by our sponsors!"

$ 90.73

Anonymous donated at 4 months ago

"We hope we can reach your goal!!!"

$ 26.38

Matched Gift donated at 4 months ago

"Your donation has been doubled by our sponsors!"

$ 26.38

Anonymous donated at 4 months ago

$ 21.10

Matched Gift donated at 4 months ago

"Your donation has been doubled by our sponsors!"

$ 21.10

Michelle Kellett donated at 4 months ago

$ 1.5k

Poppy donated at 4 months ago

"With all my love Gracie"

$ 1.5k

Matched Gift donated at 4 months ago

"Your donation has been doubled by our sponsors!"

$ 5k

Matched Gift donated at 4 months ago

"Your donation has been doubled by our sponsors!"

$ 5k

Anonymous donated at 4 months ago

$ 1.5k

Matched Gift donated at 4 months ago

"Your donation has been doubled by our sponsors!"

$ 1.5k

Anne Maly donated at 4 months ago

"For my darling Gracie, love Nana."

$ 5k

Matched Gift donated at 4 months ago

"Your donation has been doubled by our sponsors!"

$ 5k

Anonymous donated at 4 months ago

$ 10

Matched Gift donated at 4 months ago

"Your donation has been doubled by our sponsors!"

$ 10

Anonymous donated at 4 months ago

$ 52.75

Laura Hook donated at 4 months ago

"Go Grace! From Blythe x"

$ 55.92

Anonymous donated at 4 months ago

$ 520

Julia Lukas donated at 4 months ago

"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 💕"

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!

4 months ago

$53

Jennie Star

you’re a very special little girl Gracie, with so much love and support around you.

4 months ago

$42

4 months ago

$148

Matched Gift

Your donation has been doubled by our sponsors!

4 months ago

$148

4 months ago

$106

Matched Gift

Your donation has been doubled by our sponsors!

4 months ago

$106

The Canete Family

4 months ago

$53

Matched Gift

Your donation has been doubled by our sponsors!

4 months ago

$53

$158

Matched Gift

Your donation has been doubled by our sponsors!

4 months ago

$158

4 months ago

$53

Matched Gift

Your donation has been doubled by our sponsors!

4 months ago

$53

Anonymous

Go Grace!

4 months ago

$150

Matched Gift

Your donation has been doubled by our sponsors!

4 months ago

$150

Kellaigh Moffett

4 months ago

$200

Matched Gift

Your donation has been doubled by our sponsors!

4 months ago

$200

$56

Matched Gift

Your donation has been doubled by our sponsors!

4 months ago

$56

4 months ago

$21

4 months ago

$21

Matched Gift

Your donation has been doubled by our sponsors!

4 months ago

$21

4 months ago

$1.5k

Matched Gift

Your donation has been doubled by our sponsors!

4 months ago

$1.5k

Anne Maly

For my darling Gracie, love Nana.

Please Help MeReach My Goal

Raised

$41,578

My Goal

$40,000

Select amount to donate

Why I’m doing Jeans for Genes’ Bake it Blue

Latest donations

My Impact

Hours of research

Funds raised over the years

Biggest Donor

Jean-ius Donor

$5,000

Thank you to our Sponsors

Net Knight

Jennie Star

Liam Jackson

Matched Gift

The Cahill Family

Matched Gift

Cathy Priebbenow

Matched Gift

Anonymous

Matched Gift

Stone Family

Matched Gift

Francene Harrison

Matched Gift

Felicity Frankish

Matched Gift

The Canete Family

Matched Gift

Xuefan Hu

Matched Gift

Corpus Christi Catholic School

The Mallin Family

Matched Gift

Matched Gift

Sue Mahony

Matched Gift

Jayne Wheen

Isla Wilson And Family

Matched Gift

Matched Gift

Courtney Sutherland

Matched Gift

Tracy Spooner

Matched Gift

Corpus Christi Catholic School

Matched Gift

Donna

Matched Gift

Cran Mallin

Matched Gift

Sally Mallin

Matched Gift

Canete Family

Matched Gift

Liz Williams

Matched Gift

Belinda Camilleri

Matched Gift

The Watts Family

Matched Gift

Collins Family

Matched Gift

Penny Delmage

Matched Gift

Anonymous

Matched Gift

Anonymous

Matched Gift

Alexina & Family

Matched Gift

Falinski Family

Matched Gift

Anonymous

Matched Gift

Please Help Me
Reach My Goal