Henry - LTBL Awareness

Share our page

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...

$419

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

Biggest Donor

Amanda Temperly

$60

Thank you so much to our biggest supporter, Amanda Temperly, for donating an incredible $60 to help fund vital research into curing children’s genetic diseases.

Our Impact

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

8

Hours of research

Every $50 raised funds an hour of vital research.

Thank you to our Sponsors

$55

Bernadette Tranter

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

3 days ago

$50

Sarah Mcveigh

Proud of you! You got this, go girl x

1 week ago

$60

Amanda Temperly

With loads of live…

1 week ago

$55

Danielle Close

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

1 week ago

$55

Chloe Williams

Go girl!

1 week ago

$24

Porters

Good luck !! It’s a great cause

1 week ago

$60

Matched Donation

1 week ago

$60

Shon Iddles

1 week ago