Henry - LTBL Awareness

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Why we’re skipping

We’ll be skipping through August to raise money for Children’s Medical Research Institute and raise more awareness for genetic conditions. 

Henry has an official diagnosis of Leukoencephalopathy with thalamus and brainstem involvement and high lactate (LTBL) caused by pathogenic changes in the EARS2 gene. 

He is 1 of ~100 people in the world who has this specific condition, so it’s extremely rare.

The gene variation triggered a mitochondrial condition, which has affected the development of the white matter of his brain, and is the cause of his development delay. His brain is continually creating new neuro pathways to acquire new skills which is both really cool and extremely challenging to navigate his unique path in life.

By joining Jeans for Genes in August, we’re hoping to raise more awareness for the lesser known conditions out there!

Join me, Share this message or Donate. Thank You!

Raised so far

With your help, we have raised...

$1,607

You’re helping fund research to find cures for kids with genetic diseases. Every dollar counts!

Biggest Donor

Amanda Barry

$250

Thank you so much to our biggest supporter, Amanda Barry, for donating an incredible $250 to help fund vital research into curing children’s genetic diseases.

Our Impact

So far this year, we've helped fund...

32

Hours of research

Every $50 raised funds an hour of vital research.

Thank you to our Sponsors

$40

Caitlin Crowley

Great skipping Katie!

1 week ago

$88

Anonymous

1 week ago

$18

Violet Mulhall

Katie Jane, I just wanted to remind you how incredible you are! I’m so proud of you for skipping every day in August and staying committed to your goal. It’s not always easy to find time every day, but you’re proving that with a little determination, you can do amazing things. Keep believing in yourself, keep showing up, and remember that every skip counts. You are strong, inspiring, and capable of so much more than you realise. Don’t give up — you’ve got this! 🩷 You have inspired me in so many different ways. Thank you for always being such an amazing person. I love you! 💕 Keep skipping, keep smiling, and keep being the amazing person you are! ✨ Love you lots! 💕

4 weeks ago

$55

Matched Gift

Your donation has been doubled by our sponsors!

1 month ago

$55

Angela Perrin

Hope this skips you a bit closer to your fundraising goal!

1 month ago

$250

Matched Gift

Your donation has been doubled by our sponsors!

1 month ago

$250

Amanda Barry

Go Team Iddles, amazing work & a great cause x

1 month ago

$61

Meegan Hagan

1 month ago

$61

Matched Gift

Your donation has been doubled by our sponsors!

1 month ago

$24

Louise F

1 month ago

$61

Krystina Higgins

Strap in those puppies and jump to it

1 month ago

$100

Rami Kaur

1 month ago

$124

Matched Donation

1 month ago

$55

Bernadette Tranter

I'll hold Albie while you skip! 😍 Henry is the cutest and Shon is amazing. Happy to support you all.

1 month ago

$50

Sarah Mcveigh

Proud of you! You got this, go girl x

2 months ago

$60

Amanda Temperly

With loads of live…

2 months ago

$55

Danielle Close

You inspire me in so many ways Shon, we love you team Iddles

2 months ago

$55

Chloe Williams

Go girl!

2 months ago

$24

Porters

Good luck !! It’s a great cause

2 months ago

$60

Matched Donation

2 months ago

$60

Shon Iddles

2 months ago