Michael Leith

100 Skips a Day

My Skipping Progress

Total Skips

0 Skips

Goal

3,100 Skips

0% Complete
I'm doing 100 Skips a Day to raise money for kids like my daughter Adeline! With funds going toward finding cures for genetic diseases that impact children.
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:

$2,487

Member

Rhi Harby

Member

james Reti

Raised so far:

$4,300

Member

Nicole Heffernan

Raised so far:

$541

Member

Chantel Heldt

Raised so far:

$1,077

Member

Michael Leith

Raised so far:

$1,069

Member

Lea Happes

Raised so far:

$28

Member

Zoe Munce

Raised so far:

$374

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:

$671

Member

Mya James

Raised so far:

$558

Member

Megan Fenwick

Raised so far:

$745

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:

$532

Member

Taylor Hatch

Member

Steve Gauci

Raised so far:

$106

Member

Max Tamatoa

Raised so far:

$54

Member

Jarrad Raddon

Raised so far:

$2,005

Member

Kelly Skinner

Member

Sonja Grovermann

Raised so far:

$63

Member

Emma Bacon

Raised so far:

$818

Member

Brittany Campo

Member

Brittany Anderson

Raised so far:

$211

Member

Alyssa Woodley

Raised so far:

$2,498

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:

$2,336

Member

Isabelle Charter

Raised so far:

$211

Member

Eve Curtis

Raised so far:

$534

Thank you to our Sponsors

$100

Scott Sargant

2 weeks ago

$54

David

2 weeks ago

$106

Sophie Houlihan

2 weeks ago

$106

Kieran Hennelly

2 weeks ago

$106

Anonymous

3 weeks ago

$54

Mick Mcgreevy

Love to the fam mate, get hoppin!

3 weeks ago

$33

Greer J

Go Anna and Michael!!! Keep up the amazing work

3 weeks ago

$33

Ryan Garay

Nothing is more important than family.

3 weeks ago

$54

Soultana Chotou

I am so impressed at how brave your family is! I wish for the biggest breakthroughs for all families affected by this illness

3 weeks ago

$211

Rhyno Pretorius

3 weeks ago

$211

Michael Leith

3 weeks ago