It feels like much has happened and there is much to report on. Firstly, a huge thank you to Alison Caldwell for her wonderful report on Batten Disease and Matilda. It aired today and left us all feeling fairly weepy but so pleased with her take on us and the issues surrounding rare diseases. If you missed it, you can now listen to it online or read the transcript.
Matilda’s Story on The World Today.
Of course, this weekend was also the weekend of TOUGH MUDDER!!! And I am pleased to report that Simon came home in one piece, albeit a bit sore! He is completely fired up for next year and has some crazy idea that I might do it too, but I am not sure that is ever going to happen!



I am very proud of all them and so thankful to everyone who donated via the Everyday Hero Page. We raised way more than my initial target – I kept having to up it! Thank you so much.
And thank you so much to everyone who came to our BBQ yesterday and bought Team Tilda and Batten Association merchandise. I looked around at one point and saw 25 people in the same shirt, it looked absolutely fantastic.

A huge shout out to Tim for designing and organising the shirts and the tea towels. They were a hit! We do have a few left over if anyone was interested.
Tea Towels – $12.50
Tshirts – $27.50


It was a truly lovely day, surrounded by friends and family. We felt very loved and very supported and raised a whopping $1685 which will go directly to the Batten Disease Support and Research Association.
Health Update
Today, we had an appointment with Tilda’s gastroenterologist. Although Tilda hasn’t actually thrown up since last Sunday, she still has a lot of coughing and gagging during and after her feeds. The gastroenterologist believes that it may be that her stomach is delaying emptying or that she is having reflux. The fixes for which are either a Nissen fundoplication or changing her tube to a gastrojejunostomy tube. Neither option appeals to me really, I must say. We are having a barium swallow study done as soon as possible to ascertain exactly what is going on when she is eating and decide then what the next steps might be. It is frustrating that there always seems to be something to worry about.
Thankfully it is school holidays and we also have things to look forward to! We will be heading down to Anglesea for the Easter weekend and then have the huge excitement of meeting Dora herself at one of her shows next week! Thank you so much to Di for arranging this. I will definitely be taking footage of Tilda’s reaction! And just to add to the fun, we have The Wiggles next Thursday! An action packed couple of weeks which is good news indeed.
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