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Anna Pitman

100 Skips a Day

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Raised

$2,603

My Goal

$3,000

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3,100 Skips

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Skipping for a cure for Adeline
Adeline had her first seizure at 2 weeks old and at almost 5 years old has never had a seizure free day since. 

Due to the severe retractable nature of her seizures she cannot sit, stand, walk or talk, she has no functional use of her hands and is legally blind (cortical visual impairment).

Adeline suffers with a genetic disorder known as CDKL5 Deficiency Disorder (CDD). This is one of the most severe forms of epilepsy and has a devastating prognosis. The CDKL5 gene provides instructions for making proteins that are essential for normal brain and neuron development. It is one of the 'learning genes' and when it doesn't work properly, children suffer severe disability and retractable seizures, despite medication. 

What does this mean for Adeline and our family?

Adeline spends much of her time lying on her back with very limited movement. She doesn't reach for her toys to play with, she does not look us in the face or smile at our voice. She needs support with every single one of her daily tasks from movement to eating to playing to hygiene to dressing. She also gets easily overstimulated and as a result, doesn't participate in many family activities outside of the home. She can not go to playgroup, play at the beach, slide or swing at the park or ride down the street like her peers do.

CDKL5 is not inherited and it can not be screened for. It is a spontaneous mutation at conception and the odds are like being struck by lightning.

In recent years there has been some fantastic progress in gene therpay for CDD and we hold hope that a cure may become available in her lifetime. 

Fundraisers like this help our researchers with this important work. 

What we are realistic about, is that this gene therapy may not be made available to Adeline in her lifetime. The brutal reality is that she may not even be alive by the time she can access the treatment (1-10 years away).

But amongst all of her and our suffering, we hold onto hope that if not for Adeline, perhaps for another child. Perhaps our efforts can contribute to interrupting seizures as soon as they start for other CDKL5 infants and give that child a fighting chance of a happy, healthy life. 

No donation or gesture is too small, no effort is unnoticed. Whatever you can do to support this research we are extremely grateful for.

For those joining our Skipping Team, please join our team chat here  https://chat.whatsapp.com/K1JUADVrwzeBZmKEAmDque

My Team Members

Member

Renee Moles

Raised so far:

$197
Member

Anna Pitman

Raised so far:

$2,603
Member

Rhi Harby

Raised so far:

$100
Member

james Reti

Raised so far:

$5,662
Member

Nicole Heffernan

Raised so far:

$541
Member

Chantel Heldt

Raised so far:

$1,260
Member

Michael Leith

Raised so far:

$1,069
Member

Lea Happes

Raised so far:

$28
Member

Zoe Munce

Raised so far:

$407
Member

Shaylee Munce

Raised so far:

$17
Member

Mikaela Pitman
Member

Zoe Alvey

Raised so far:

$190
Member

Airlie Eastwood

Raised so far:

$266
Member

Allyce Wright

Raised so far:

$750
Member

Mya James

Raised so far:

$558
Member

Megan Fenwick

Raised so far:

$767
Member

Hamish Johnston

Raised so far:

$499
Member

Helena Margarita Guarin Nuñez

Raised so far:

$210
Member

Angela Joyce

Raised so far:

$435
Member

Angela Leta Kaye

Raised so far:

$619
Member

Taylor Hatch
Member

Steve Gauci

Raised so far:

$106
Member

Max Tamatoa

Raised so far:

$54
Member

Jarrad Raddon

Raised so far:

$2,259
Member

Kelly Skinner
Member

Sonja Grovermann

Raised so far:

$63
Member

Emma Bacon

Raised so far:

$907
Member

Brittany Campo
Member

Brittany Anderson

Raised so far:

$211
Member

Alyssa Woodley

Raised so far:

$3,442
Member

Talia Henshall
Member

Holly Escott

Raised so far:

$266
Member

Olivia Ashworth

Raised so far:

$1,285
Member

Jenna Lippert

Raised so far:

$362
Member

Candice Marsden

Raised so far:

$1,508
Member

Catherine Anselmo

Raised so far:

$54
Member

Brit Wood
Member

Paige Leith

Raised so far:

$518
Member

Kelly Skinner

Raised so far:

$2,588
Member

Isabelle Charter

Raised so far:

$211
Member

Eve Curtis

Raised so far:

$642

Thank you to our Sponsors

$54

Katie Fubbs

Great work Anna and team!

2 months ago

$50

Anonymous

Forever in awe of you and your drive to achieve your mission.

2 months ago

$12

Phyllis Greaves

2 months ago

$50

Naomi Bezu

You and Adeline inspire me so much

2 months ago

$54

Lily Macfarlane

Sending all the love in the world to you all. Xoxox

2 months ago

$54

Stephanie Leibovitch

2 months ago

$33

Cassie Griffiths

Sending strength!

2 months ago

$33

Alexandra East

Sending love to you and your beautiful girl always Anna. You are supermum and a powerhouse xoxo

2 months ago

$100

Anonymous

2 months ago

$54

Simon Montgomery

Go sister 💫

2 months ago

$106

Russell Dyjak

:)

3 months ago

$33

Matched Gift

Your donation has been doubled by our sponsors!

3 months ago

$33

Megan Szalkowski

3 months ago

$200

Matched Gift

Your donation has been doubled by our sponsors!

3 months ago

$200

Jennifer Philps

Sorry I missed you in Perth but thinking of you and Adeline and research will continue to the best of our ability. Well done skippers.

3 months ago

$211

Chris Pitman

3 months ago

$211

Matched Gift

Your donation has been doubled by our sponsors!

3 months ago

$54

Matched Gift

Your donation has been doubled by our sponsors!

3 months ago

$54

Matt Renshaw

3 months ago

$200

Matched Gift

Your donation has been doubled by our sponsors!

3 months ago

$200

Luke Jackson

3 months ago

$33

Amy Padua

Anna - you are such an inspirational mother and an amazing advocate for your beautiful daughter Adeline. Keep up the remarkable work with raising awareness for CDKL5 :)

3 months ago

$106

Marty Scott

3 months ago

$54

Claudio Sapienza

Hey Anna, can't skip with you on Wednesday, so sparing you of that sight :).

3 months ago

$100

Hannah Pierce

Go team x

3 months ago

$106

Steph Francas

3 months ago

$106

Sharon Cois

I hope you reach your goal and best wishes to you and your family/team.

3 months ago

$100

Varad Raval

Best wishes, Anna!

3 months ago