Archive | March, 2014

Today we bounce

31 Mar

Today is Batten Awareness Day. Yesterday we marked 4 months since we lost Tilda and in two weeks, Nicole will have marked a year since the loss of gorgeous Jack. Insidious, brutal, heartbreaking. It has to stop.

I am in contact with another lovely Batten mum, Peta, who had a wonderful idea to commemorate this day.

Bounce 4 Batten


Peta’s daughter Mia is a gorgeous 4 year old with a cheeky smile and a mop of blond curls. She was diagnosed with Batten disease in May last year.  You can learn more about Mia here –

So today, we bounce! Maggie and I will get on the trampoline later today and give it our all. We bounce for Tilda and for Jack and we bounce for Mia.

Bouncing for Batten seems like such a good fit for our Tilda who loved the trampoline so very much.

Tilda bouncing


Thank you Peta for this wonderful idea. If anyone does feel like bouncing today, I would love to see it! Post to Facebook, Twitter or Instagram or if you are not into any of those technological wonders, you can email them to me at

Thank you so much for all the messages of love and support yesterday.



Batten Awareness Day – 31st March

23 Mar

Next Monday is National Batten Awareness Day. A huge thank you to my lovely friend Mille for spreading the word on 3AW this morning and for the tie-in story on Gardening Australia which will go to air next Saturday night at 6:30pm on ABC.  I would encourage everyone to watch this heartbreaking and moving story of a grandmother, who lost her two granddaughters to the disease, opening up her garden to raise money for Batten research. This inspirational lady has raised over $25,000 for the organisation.

This year, we are keeping pretty quiet. The 30th March marks the 4 month anniversary of our loss and emotions are very much all over the place. It isn’t really getting any easier. Truth be told, often it feels like it is harder. The further away we get from the 30th November 2013,  the further away we get from holding her, kissing her, having her here.

I found this wonderful video the other day, another demonstration of Tilda’s joy, taken on the 30th March 2012. Full of laughter and delight and the wonder of those sparkly shoes.

A year later, she was still laughing but it required much more of an effort, cue my ridiculous opera style singing.

This year, she is not here. And will not be for any of the years to come. It is a shitty, horrible, heart wrenching thing to try and come to terms with. We are so lucky though, to have had her at all.

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