Spotlight

Rasmussen's Encephalitis




Dedicated to the pursuit of a cure for the debilitating neurological disease Rasmussen's Encephalitis. Research scientists around the world are being encouraged to share...

Hemispherectomy Australia

'Hope in one Hemisphere'




Patients and their families are offered support and the most up to date information and research...

Fundraiser

Support Didi's ongoing struggle with paralysis and as a one handed person...

About Us

Highlights

One special girl's journey with Rasmussen's Encephalitis


Our Mission:

The Indigo Butterfly is our beautiful daughter Didi (Dylan). Her condition means that her overall development may be slower or a little more difficult than others but we already know she is special. Didi's personality and Indigo aura shine through when you meet her.


We are sharing Didi's story about the pain and triumphs of life with a child who has been diagnosed with a debilitating brain disease. Our goal is to raise awareness and financial support for scientific research in Rasmussen's Encephalitis (RE). Our hope is that no other child has to have surgery and no other family has to make the heartbreaking choice to have half of their child's brain removed, so as not to deny them a chance at a reasonable quality of life.


Each case of RE is very different but the treatments offered are similar and we extend our support to any family who has a family member going through similar experiences. We're happy to hear from anyone who has an interest in the disease.

 

We're always looking for new information. If there's something you think we could benefit from or should share with others, please write to us. Thank you.

 

Dancing and having fun

Catch up with Didi's dancing as she develops new styles... (learned from her Dad)

 

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This boot is made for walking

With her left leg suffering paralysis Didi now requires an orthotic to keep her leg developing in the correct way...

 

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