No news is good news!

7 May

And so it would seem in the last couple of weeks! Tilda has been doing really well since coming out of hospital and the new feed regime seems to be working out. We have had no vomiting and a steady and very welcome weight gain. We had a couple of appointments last week, with the gastroenterologist and our pediatrician, both of whom were very pleased with how she is going. I am thrilled to announce that Tilda is now the correct weight for her height, 10th percentile but still! We are rejoicing in her fuller face and not so knobbly knees.

Research Meeting in Sydney

It was lovely to be in Sydney last week, I met the wonderful Vanessa – the woman behind the Australian chapter of the BDSRA and the rest of the research team – 8 in total, all doing various research into the different forms of Batten across Australia and New Zealand. It was a productive meeting but did highlight to me just how small this orgnisation is and diffiicult it is to get things off the ground. It would be amazing to have the resources to do what we want to do but at this stage, we just don’t. The research team reported back from the recent London conference – details of which can be found here. Some discussion points were

  • How to separate ourselves from the American chapter so that we have some control over where funding money can go
  • The need for a national database of those affected by Batten disease with comprehensive details on methods of diagnosis, treatments, variants etc
  • Linking to Philanthropy Australia to find potential funding opportunities.
  • Networking with relevant organisations to ensure they know of BDSRA
  • Linking in to clinical trials that are already being conducted
  • The need for a paper on the Strategic Direction that the Research Commitee want to undertake

It was a starting point and I look forward to continuing my involvement and hopefully watching the organisation grow in such a way that it is able to undertake more research in Australia in a really meaningful way. I will keep you posted!

New Friends

I have been very lucky to have recently met another very special Batten mum, Nicole and her small one, Jack who is 4 1/2. We only met a couple of months ago but the bond was instant and I feel like we have been friends forever. Matilda and Jack also seem to have a very special bond and you can see that they really enjoy spending time together.

Tilda smiles and laughter are what we live for and thankfully we get them in abundance.


10 Responses to “No news is good news!”

  1. Danielle x May 7, 2012 at 11:02 am #

    Gorgeous video to watch. Put a big smile on my face! x

  2. Juliet May 7, 2012 at 2:27 pm #

    So glad to hear the good news. The database is a great idea, as is hooking up with Philanthropy Australia, but the most important thing must be the happy look on Tilda’s face! All my love

  3. Annie May 7, 2012 at 5:18 pm #

    It’s great to read you’re making such headway. I originally heard you on ABC radio and you’re quite inspiring! I can see that you’re very busy but if you can find the time, please contact me so that I can offer you a small gift for your family. Google my name along with ‘photography’ and you’ll see what I mean 🙂 I’m genuine; I’ve searched but I have found no other way of contacting you. All the best to you.

  4. Jo May 7, 2012 at 7:11 pm #

    So pleased to read this post and see that smile. You guys are just ace xxx

  5. Jan Marshall May 7, 2012 at 7:54 pm #

    Lovely to hear your news – I’ve really missed your updates. Lovely video of Tilda and Jack. Hope things continue to go well.

  6. Anne Bunting May 7, 2012 at 8:56 pm #

    So glad that life is going on an even keek for you and that the conference was such a positive experience. Matilda and Jack look like soul mates and obviously love being together.
    love to you all Anne

  7. cally berryman May 8, 2012 at 8:48 am #

    Such good news, made me smile. Terrific video of Tilda and Jack. Such a joy to make a new friend.
    Love Cally x

  8. Carole and Garry Laird May 10, 2012 at 8:23 pm #

    Thanks for the update Laura, great to read all the news.

    Carole and Garry

  9. Didi May 12, 2012 at 9:37 pm #

    So happy that all is going so well with Tilda. It made me smile to see her so happy with her new friend Jake. It will be good for you to have a friend to talk it all through who knows what it’s like having a child with Batten. My dear friend Laura with love Didi

  10. nicole sidiropoulos June 1, 2012 at 11:26 pm #

    how precious our babies are!!!the four of us no matter what paths we take are forever united.we love you both and this bond will never be broken.tilda and jack such happiness and comfort to know you will hold hands for all of time!!!my L i love

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