Batten Awareness Day, Tough Mudder and being on the radio

2 Apr

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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19 Responses to “Batten Awareness Day, Tough Mudder and being on the radio”

  1. JessB (Kate's friend) April 2, 2012 at 9:20 pm #

    Oh gosh, I had a listen to the radio interview right before I read this post, and I must admit I did have a little weep. You’re all just so lovely, and bloody Battens is just so rubbish, I can’t stand it. But you’re right, we go on, loving each other.

    Congrats to Simon on completing Tough Mudder, a mate of mine did it too, and said it was heaps of fun. Laura, if you do it next year, I’ll do it with you!

    And finally, I’m sorry I couldn’t make it to the BBQ, but lovely Kate bought me a tea towel! I’m super delighted and can’t wait to pick it up from her and bring it home – I’ll think of you all, and expecially smiling, sunny Tilda every time I see those sparkly shoes.

    • teamtilda April 6, 2012 at 4:43 pm #

      Thanks Jess and thank you for all your lovely comments and support! It is very much appreciated. We shall catch up again one day!! Much love. Xox

      • JessB (Kate's friend) April 6, 2012 at 5:54 pm #

        No worries at all Laura, it would be wonderful to see you and Matilda again, and maybe even meet Simon!

  2. morrisonpix April 2, 2012 at 9:38 pm #

    congrats!! great effort on all of it, whew! you have been busy! love the way the t-shirts and tea towels turned out! would love a tea towel if there is one left over. love, nancy

    • teamtilda April 6, 2012 at 4:36 pm #

      Thanks Nancy! It has been a busy time. Absolutely you may have a tea towel. Email me your address and I will post one out to you. Her sparkly shoes have definitely become her signature! We will also talk soon to arrange our next photo session. Xoxo

  3. morrisonpix April 2, 2012 at 9:40 pm #

    fantastic efforts all around! love the way the tea towels and t-shirts turned out!! save a tea towel for me please ❤
    love, nancy

  4. Waidehi April 2, 2012 at 10:55 pm #

    Wow! What an interview Laurel. Congrats to le Simon on the Tough Mudder completion and please save some t-shirts for us. Sorry to hear about the internal stuff re her digestion…xxoo

  5. Terri Beggs April 3, 2012 at 12:33 am #

    Wonderful interview Laura & Simon, will increase awareness and hopefully goverment funding. Would love a tea towel or tshirt, will talk to Janet.
    Love and laughs with your beautiful girl.
    Terri xxx,

    • teamtilda April 6, 2012 at 4:44 pm #

      Thanks Terri! Here’s hoping for something. Would love for you to have a tea towel and will leave one with mum. Much love. Xoxo

  6. Juliet April 3, 2012 at 8:15 am #

    Sounds like an action-packed weekend ahead of a wonderful holiday fortnight., I hope Tilda enjoys every minute and that the feeding problem can be fixed pronto. Congratulations to Simon. It will surprise nobody to hear that I won’t be joinging him next year but am happy to barrack. Love to all of you

  7. kylie April 3, 2012 at 10:02 am #

    Good job on the radio Sister!!

  8. FiFi April 3, 2012 at 12:59 pm #

    Well done on the radio piece guys, it sounded fantastic. x

  9. Anne Bunting April 3, 2012 at 3:55 pm #

    What a superb job you are doing not only of being the best possible parents to Matilda but in raising awareness. I listened to you superb interview – one thing is certain Matilda must know in every core of her body just how loved she is. If there are any tea towels or shirts left I would love one. Will make a long overdue phone call to Janet.
    Have a wonderful Easter
    love Anne

    • teamtilda April 6, 2012 at 4:45 pm #

      Thanks Anne! We would love for you to have a t shirt or tea towel and will leave one with mum. Thank you so much for all your love and support. It means so
      much to us. Xox

  10. Carole and Garry Laird April 3, 2012 at 4:38 pm #

    Dear Laura

    Thanks for sending through the World Today report for Batten Awareness Day. Hopefully it will help to make a difference.

    Well done Simon on getting through Tough Mudder .

    Have a wonderful Easter at Anglesea.

    Love Carole and Garry

    • teamtilda April 6, 2012 at 4:46 pm #

      Thanks Carole and Garry! Glad you got a chance to listen. Thanks so much for all your kind words and support. Xoxox

  11. Suzanne April 5, 2012 at 6:21 am #

    I would very much love a tea towel. Please mail me how we can arrange, will of course cover postage. Much love to all xx

    • teamtilda April 6, 2012 at 4:40 pm #

      Absolutely, I would love for you to have one. Email me your postal address and I will send one off to you. Payment can be made via the everyday hero page if that is the easiest. My email is laurasmith67@gmail.com. Thanks love. Hope all is well with you. Love to Ian and Archie. Xoxox

  12. Didi April 8, 2012 at 1:25 pm #

    Sorry to hear that you have more bad news.I am happy to here you guys are taking a much needed vacation.Pray that Tilda feels good during your fun time away.

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