Zoe Munce

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24 Jun 2025 by Zoe Munce

Finding 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 her 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.

My Team Members

Member

Renee Moles

Raised so far:

$197

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Anna Pitman

Raised so far:

$2,549

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Rhi Harby

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james Reti

Raised so far:

$5,389

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Nicole Heffernan

Raised so far:

$541

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Chantel Heldt

Raised so far:

$1,260

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Michael Leith

Raised so far:

$1,069

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Lea Happes

Raised so far:

$28

Member

Zoe Munce

Raised so far:

$407

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Shaylee Munce

Raised so far:

$17

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Mikaela Pitman

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Zoe Alvey

Raised so far:

$190

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Airlie Eastwood

Raised so far:

$266

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Allyce Wright

Raised so far:

$750

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Mya James

Raised so far:

$558

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Megan Fenwick

Raised so far:

$767

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Hamish Johnston

Raised so far:

$499

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Helena Margarita Guarin Nuñez

Raised so far:

$210

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Angela Joyce

Raised so far:

$435

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Angela Leta Kaye

Raised so far:

$619

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Taylor Hatch

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Steve Gauci

Raised so far:

$106

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Max Tamatoa

Raised so far:

$54

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Jarrad Raddon

Raised so far:

$2,092

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Kelly Skinner

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Sonja Grovermann

Raised so far:

$63

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Emma Bacon

Raised so far:

$907

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Brittany Campo

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Brittany Anderson

Raised so far:

$211

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Alyssa Woodley

Raised so far:

$3,166

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Talia Henshall

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Holly Escott

Raised so far:

$266

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Olivia Ashworth

Raised so far:

$1,285

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Jenna Lippert

Raised so far:

$362

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Candice Marsden

Raised so far:

$1,508

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Catherine Anselmo

Raised so far:

$54

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Brit Wood

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Paige Leith

Raised so far:

$518

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Kelly Skinner

Raised so far:

$2,533

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Isabelle Charter

Raised so far:

$211

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Eve Curtis

Raised so far:

$642

Thank you to our Sponsors

$33

Woo

Stick money

11 minutes ago

$23

Matched Gift

Your donation has been doubled by our sponsors!

3 weeks ago

$23

Kevier Claus 🎅🏻

Zoe, this is beautiful — and so are you. The love and fight you carry for Adeline is just unreal. Thank you for being the kind of person who shows up, skips hard, and spreads hope. Merry Christmas from Kevier Claus 🎅🏻 — proud to be in your corner.

3 weeks ago

$20

Matched Gift

Your donation has been doubled by our sponsors!

3 weeks ago

$20

Zoe

3 weeks ago

$33

Ashley Eastwood

Great work Zoe xx

1 month ago

$106

Sandra Oreilly

1 month ago

$17

Shaye Skraha

🥺🥰

1 month ago

$12

Grace Reeves

❤️❤️❤️

1 month ago

$50

Graham & Binnie Munce

Donated hun fantastic work

1 month ago

$33

Tracey Alvey

Good on you darling

1 month ago

$23

Generous Gex

Keep skippin brah!

1 month ago

$15

Anonymous

1 month ago