So much support

13 Mar

Thank you so much to everyone who has already donated or pledged and also to those who have posted the link to their Facebook pages. Your support is overwhelming, and wonderful, and we are so grateful.

Tilda remains in good cheer!! Which is the best news of all. The weekend before last, we went on an adventure down to Phillip Island, to scope out the terrain for Simon’s upcoming Tough Mudder escapades! It was a lovey day out and we were even able to dine out together at a cafe. No one seemed to bat an eyelid at our iv pole and feeding pump and it was so lovely to be able to do something so ‘normal’.


We felt so cocky that we thought we would go camping over the long weekend but unfortunately there has been a bit of vomiting from Tilda and we felt that vomiting and tents really didn’t go all that well together! Instead, we set the tent up in the backyard and had a stay at home camping adventure!

We’re not entirely sure what this latest vomiting development is all about. Possibly a bug, possibly some reflux. We have been in touch with the lovely dieticians at the Childrens and are trying out a few remedies. Hopefully this too shall pass.

Thank you again. If you haven’t donated and want to there is still plenty of time! Please also feel free to pass the link on far and wide. After all, it is all about awareness.

Batten Disease Awareness Day


4 Responses to “So much support”

  1. Danielle Landy March 14, 2012 at 6:14 am #

    What a lovely happy photo of Tilda – so beautiful to see.


  2. jackie March 14, 2012 at 7:09 am #

    gorgeous photo x

  3. Juliet March 14, 2012 at 8:33 am #

    Tilda certainly looks really happy, and the PEG really does seem to be working. Hope the vomiting has stopped. Luckily the weather was good (and a full moon!) for suburban camping! Love to you all

  4. cally berryman March 16, 2012 at 6:46 am #

    Love the photo and hope Tilda’s vomiting has stopped.
    Sending warm hugs. Love Cally XX

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