Team HHE

Never think that just a few people can't make change.... they can! Through sharing our story, we now have a small community of Support for our children living with HHE Syndrome. Thankyou @sourcekidsmagazine for raising the awareness 💜 Head over to Source Kids for latest updates 👍

Why Rare Disease Day is so important to me!

On the last day of February each year, it is Rare Disease Day.  I never knew of this day before 2011.  I stumbled upon it, when our family dynamic changed, and our son was diagnosed with a rare disease - an intractable form of epilepsy - HHE Syndrome. Over the past 3 years or so, we …

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Are you ready…. to do the Bus Stop?! **This post is dedicated to Poppy Pring – the Bus Driver!

My dad, Danger's Poppy, was many things to many people.  One of those, was a bus driver to students - International students, high school and primary school students.  He drove from the Gold Coast to Brisbane, and all the surrounding areas.  He turned up the kids' music when they asked 'hey Mr Bus Driver, turn …

Continue reading Are you ready…. to do the Bus Stop?! **This post is dedicated to Poppy Pring – the Bus Driver!

Please sign the petition – Fair for Rare!

Please sign this petition - it won't take more than 5 seconds of your time and it's so important to support this project. Sign Petition Here! WHY? There is no National Rare Disease Plan in Australia.  It's really important we get one for little tackers like Mikey, who I blog about on our daily joys, challenges and …

Continue reading Please sign the petition – Fair for Rare!