Tag: HHE Syndrome

Days like these

Days like these, like the one pictured here, is a sublime day.  Full of fun, laughter and not a care in the world.  It is so refreshing when it’s an ‘easy’ day for Mikey. When it’s an easy day for Mikey, it’s an easy day for the family. On this day, it was a beautiful …

Time… but not as you know it

First published by Bryce Wilton on 7 April 2017  It’s “TIME” Daddy but not as you know it. Me Hey Mike-D you want to help Dad fix the shelf? Of course he does the question is purely rhetorical. Let’s go into the Garage and get the tools. Mikey Mikey no put the fishing rod down. …

Giddee-up!

This term through our local Riding for the Disabled school, Mr Danger has been very fortunate to be asked to be part of the InStep Program. It’s the therapy used for Hippotherapy, the training he does with Snip, his horse, every Saturday morning. We have found that most things can’t keep Mikey away from his horse …

Disability and Your Response

I find that we have to be so careful of what we say in fear of offending someone, that we either say too much (and we don’t hear the other person) or nothing at all.  Both to me, can be equally damaging, depending on the circumstances.  The only way we can possibly learn from one …

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 …

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 …

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 …

When the problem is larger than life, but you can’t see it.

I don’t mean to be a downer on this post but I do think it needs to be mentioned that when you are thrown into this world of Special Needs Parenting (and by the way, the term Special Needs is on the way out – apparently the PC police are onto it… but that’s for …

I’m an over-sharer!

I’m an over-sharer!  Yeah-yeah what a surprise, you say.  Splashing it all over social media.  Who the hell cares? I certainly don’t..! People are so overloaded with their ‘feeds’ and I know if I don’t want to get into something, I keep scrolling. However, the benefit of sharing in social media is that it may …