First post!

12 Aug

Today it has been 10 weeks and 1 day since we received the news that Matilda was not just fighting a particularly malovelent form of epilepsy as we had thought. She was fighting a far greater battle, an insidious genetic condition called Batten Disease. Thursday, 2nd of June, whilst talking about other treatment options for the epilepsy, a piece of paper with some recent test results was handed to our neurologist. Her face went white and we pretty much knew straight away that the news wasn’t good.

Since that time, I think we have experienced every emotion under the sun. The first week following the diagnosis is still a bit of a blur. I remember walking out of the neurologist’s office. I remember Simon and I breaking down in the car park and going home to look at one another and ask how the hell we were supposed to deal with this. I remember drinking quite a few beers. I remember the kindess of friends, family and work colleagues who all rallied around and provided an ear, a comforting word even presents for Tilda and food for us. Thank you all so much for that.

Since that time, we have come to a better place. We kicked into high action – moved house, enrolled Tilda in the truly special Glenallen school, shed our fears about the future and concentated on the now.

The now is pretty good! Tilda is having a blast at school – photos to come once I work out how to do that! Our new house is roomy, with carpet for her to do her ever constant roly poly’s. I have settled into my new hours at work, Simon is currently playing house husband before starting back at his new work on the 29th August and most importantly, Tilda is cheery and happy and well.

My idea is to try and update this weekly to keep everyone up to date. Once I figure out how it all works, I will add more features, photos, links etc but right now we are working with the bare essentials!

Thank you for being a part of Team Tilda.

oxxo

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2 Responses to “First post!”

  1. Stella Fabinyi September 5, 2011 at 1:14 am #

    Laura has been so moving to read your posts so glad you have started writing this. Am sending you, Simon and Tilda so much love and looking forward to seeing you all at Christmas time.
    Looking forward to more entries 🙂 She’s such a beautiful girl xx

    • teamtilda September 20, 2011 at 4:04 pm #

      Aha! Yes you are coming to Christmas – good news 🙂

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First post!

12 Aug

Today it has been 10 weeks and 1 day since we received the news that Matilda was not just fighting a particularly malovelent form of epilepsy as we had thought. She was fighting a far greater battle, an insidious genetic condition called Batten Disease. Thursday, 2nd of June, whilst talking about other treatment options for the epilepsy, a piece of paper with some recent test results was handed to our neurologist. Her face went white and we pretty much knew straight away that the news wasn’t good.

Since that time, I think we have experienced every emotion under the sun. The first week following the diagnsois is still a bit of a blur. I remember walking out of the neurologist’s office. I remember Simon and I breaking down in the car park and going home to look at one another and ask how the hell we were supposed to deal with this. I remember drinking quite a few beers. I remember the kindess of friends, family and work colleagues who all rallied around and provided an ear, a comforting word even presents for Tilda and food for us. Thank you all so much for that.

Since that time, we have come to a better place. We kicked into high action – moved house, enrolled Tilda in the truly special Glenallen school, shed our fears about the future and concentated on the now.

The now is pretty good! Tilda is having a blast at school – photos to come once I work out how to do that! Our new house is roomy, with carpet for her to do her ever constant roly poly’s. I have settled into my new hours at work, Simon is currently playing house husband before starting back at his new work on the 29th August and most importantly, Tilda is cheery and happy and well.

My idea is to try and update this weekly to keep everyone up to date. Once I figure out how it all works, I will add more features, photos, links etc but right now we are working with the bare essentials!

Thank you for being a part of Team Tilda.

oxxo

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