Amanda Barry

Share my page

Raising some much needed money for this organisation!

As most of you know already my little nephew Xavier has Dravet Syndrome. He battles this terrible form of epilepsy every day, every minute, every second. Xavier’s seizures are triggered by heat, exertion, illness, sleep deprivation, being startled, and by direct and reflective light. To say this is completely devastating is an understatement. I often feel like I can’t do anything to help my beautiful brother his beautiful wife and my amazing nephew Elijah and niece Zoe so I will do what I can again and raise some money to hopefully one day find a cure for this debilitating disease.

I’ve signed up to Sofa to 6km, so I can raise awareness and start the conversation—we need to do all we can to help save more kids’ lives. Can you help by sharing this message with the people you know and asking them to donate too? 

There’s lots of work to do, but there is also lots of hope.

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

My Impact

So far this year I helped provide...


Hours of research

For every $55 raised, one hour of research is funded

Thank you to our Sponsors


St Paul’s Lutheran Kindergarten

Great work 🤩

1 month ago


Ilaria Carini

Great cause!

2 months ago


Nicole Mcfarlane

Go girl!!!!!!!

2 months ago


Matt And Niki Marnell

2 months ago


Kate Sharp

Great work!

2 months ago


Deb Jennings

Amanda, good luck! Xavier is very lucky to have someone special like you in his life xxxx

2 months ago


David Case

Donation to Xavier

2 months ago


Torquay Larder

Well done. Love from the Poveys

2 months ago



2 months ago


Craig, Tay & Fam Niles

2 months ago


Tippett Family

Good effort mate. All for such a great cause so dear to your families hearts.

2 months ago


Beccy Churchill

3 months ago


Leonie Mahar

3 months ago


Kerry Carln

Well done for our little man Xavier.

3 months ago


Amy Walve

3 months ago


Amanda Barry

3 months ago