Batten Disease Awareness Day – March 31st 2012

9 Mar

We are in a very good *knock on wood* place with Tilda at the moment. She is really happy and putting on weight and has returned with vim and vigour to the cheery Tilda of old.

It is a huge relief.

It means now we can take stock, and turn our attentions to the bigger picture. Which is of course Batten Disease itself. There is no cure for this disease. No cure. When we first found out about the condition and scoured the internet for information, these were the words that seared themselves into our brains. No cure. Always fatal. Our daughter.

I’d like to see more research being funded. I’d like some really, really, really smart people to be looking at this disease and figuring out a way to make it stop.

March 31st is Batten Disease Awareness Day. It is also the day Simon is undertaking the gruelling (but fun!) Tough Mudder event in Phillip Island, Please visit our fundraising page below to support him and the Batten Disease Support and Research Association.

Much love



4 Responses to “Batten Disease Awareness Day – March 31st 2012”

  1. Carole and Garry Laird March 9, 2012 at 2:07 pm #

    Hi Laura great to hear that Tilda is much happier and gaining weight. We would be very happy to support Simon and send him our best wishes.

    Love to you all

  2. Nancy Morrison March 9, 2012 at 8:06 pm #

    so nice to hear the good news! Go Simon!!!

  3. cally berryman March 10, 2012 at 4:37 am #

    Dear Laura, All the best for Simon. I pray that stem cells or other program is developed very soon for Battens disease. I have donated today.
    It is so good to hear Tilda is putting on weight. Please give her a kiss from me.
    Love Cally x

  4. Kylie March 13, 2012 at 10:56 am #

    Can’t wait to see Simon get electrocuted……great viewing for all the family!

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