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Ashanas Journey

Raising awareness and sharing the journey of a young beautiful girl diagnosed with STXBP1 & Alexander Disease

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Welcome to Holland

I will never forget the day Ashana was diagnosed with STXBP1 & almost every special needs parent I know- all I can remember...

We made it to 1!

WOW! Well, here we are.. 1 year earth side.. Soooooo many emotions from one extreme to another and celebrations too these past few weeks!...

The Gold Coast Colour Run! - Team Ashy

This year my closes girlfriends and I took part in the Gold Coast Colour Run.. The charity we were fundraising for was the Starlight...

Ashanas Story

Ashana was our beautiful surprise - who keeps on surprising. She is the youngest with two older brothers Chad & Deegan. She was born a...

The First 6 months

Hospitals, lack of sleep, the battle that seems never ending.. Those are the words used to describe these months. Multiple hospital...

6 months+

Our precious girl is now 11 months old... What a wild ride! Each month has its own battles and anxieties and we are still finding out...

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PO Box 782 Burleigh Heads 4220

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