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.


2 Responses to “Five years. One week.”

  1. Juliet September 3, 2014 at 1:34 pm #

    Dear Laura and Simon, I will be thinking of you as you fly through the air in what is the most marvellous tribute to a little girl who loved adventure. All my love.

  2. Jan and Dave Marshall September 5, 2014 at 10:39 am #

    Will be thinking of you both tomorrow as you soar through the air for your beautiful Tilda. What greater love…..

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