Archive | September, 2014

For Tilda

10 Sep

She would have been 8 today. Should have been 8 today. It is bittersweet to celebrate this day but it needs to be celebrated. Today being the day she came into the world 8 years ago is absolutely cause for festivities.

So we thought we would jump out of a plane.



It was amazing and exhilarating and beautiful and emotional.

I am knackered.

Keep an eye on channel 7 news tonight as they were there filming, hopefully we will get a plug in for Glenallen and for Make a Wish and be able to raise some awareness of this bastard disease that took away our girl far too soon.

A special day celebrated with truly special people. Thank you.

Update: Here is the link to the story channel 7 did. A big thanks to Paul who did a wonderful job.
Charity skydive for Matilda


Five years. One week.

3 Sep

Five years ago today marks the start of Tilda’s journey. Five years ago today, she experienced her first seizure at a local swimming pool in Darwin. That seizure led to more. Which led to even more. Hundreds a day. She lost the ability to talk, to walk, to eat, to play. She lost her life. And we miss her so fucking much.
I can’t do anything to bring her back but I can learn from her fearlessness and courage. I can try and bring awareness to a shitty,¬†shitty disease called Batten Disease. I can pay tribute to the organisations that made her life better.

This time next week, Simon and I will take our leap into the sky. If you would like to be there as we land, we would love to see you.
Date: Wednesday, 10th September
Time: Weather dependent we should be landing around 10:15am
Where: Moran Reserve, Marina Pde, St Kilda


There is still time to donate, if you feel you would like.

To donate to Make A Wish, visit –

To donate to Glenallen School, visit

Thank you so much for your continuing messages of love and support.

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