16 Feb

More children were lost to Battens this week. I am not sure of Deon’s age or what form of Batten he had. I do know that his family have the added tragedy of having already lost Deon’s older brother Terrell to Battens a few years ago. And only moments ago, I found out that  Alexia from Argentina has also passed away.

The Batten community is small and each child’s death sends shockwaves and sadness. We believe we know what is coming for our own children but each death makes it more and more real.

Other Batten children are fighting – our own dearest Jack is currently at Very Special Kids with his very special mum. She has been given the heartbreaking news that Jack is in the end stage of this horrendous disease. There has not been any clear timeline given and he continues to fight hard. Please have this family, who are very close to our hearts, in yours over the coming weeks.

In further sadness, for those that read this article in a post last year, I am sorry to report that Ronan passed away on the 15th February, age 3.


And yet we bear. Decisions are made that you cannot believe you even have to make. Recently, there was a bit of in-fighting on the Batten Facebook community page. Disagreements about how one should be and what one should feel in the face of the unstoppable. Filling in a Do Not Resuscitate form for your child was what sparked the flames and it is understandable that people have different views. I strongly believe, however,  that each family will do what they believe is best for their child and that no one else has a right to any kind of judgement for that.

We have filled in such a form. In a haze of tears. I imagine that is something that we will have to revisit when we are we closer to the end. I don’t pretend to know how I am going to feel when the unthinkable happens but I certainly do not expect to be judged for the devastating decisions that we may have to make.

We are a ways off that I believe although Tilda has given us a few scares over the last week or so. The vomiting has continued and her nutrition has now dwindled to a paltry 300ml a day. We have seen some increase in seizures and another episode of distress. However, in the last couple of days, she has regained some spark.

At school, her teacher has been absolutely thrilled with her progress in the Intensive Interaction program. Previously, Tilda had been somewhat passive during the sessions which basically involve a lot of one to one interaction but in the last couple of days, her teacher has had a breakthrough and was delighted to report on Friday that

‘We had a great morning with Matilda – she was awake and happy and VERY vocal – it was fabulous. We are so excited with this communication breakthrough – it is lovely to hear her voice at last.’

This has continued at home, with Tilda being VERY loud, A LOT! With added bonus of lots of smiles and lots of giggles. It is lovely.

We have touched base with our paediatrician in regards to the vomiting and have a new medication to try as well as a new seizure medication if we start seeing an increase again.

But for now, we rejoice in our smiling girl.

Smiling Tilda


10 Responses to “Sadness”

  1. Jackie February 16, 2013 at 2:26 pm #

    Always in our hearts and thoughts Laura and Simon…So much sadness lately! A friends of a friends daughter passed away this week. She was three. Her mother posted this poem. Such beautiful words….although we shouldn’t have to write them about our children xx

    The End
    When I was one
    I had just begun
    When I was two
    I was hardly new
    When I was three
    I was barely me
    When I was four
    I was not much more
    When I was five
    I was just alive
    But now I am six I am as clever as clever
    So I think I will be six forever and ever

    A A Milne

    • Jackie February 16, 2013 at 2:27 pm #

      Sorry I meant she was six xx

    • teamtilda February 16, 2013 at 4:33 pm #

      Hi Jackie,
      Thanks for posting that – beautiful. I did see it on FB and followed the story to learn about young Pixie. So sad – definitely too much sadness. But joy as well, in smiles and in friends.
      Huge love to you and yours
      Laura xo

  2. Lori Allen February 16, 2013 at 3:34 pm #

    Words will never express the sadness in my heart for all our children (and adults) who suffer from this ugly disease. Im sad to keep hearing about the near deaths and the deaths being the end result, nothing positive for us to look forward to. I am new to this disease and my beautiful grandson was diagnosed last month with batten and although I try to stay strong, deep down I am lost, scared and sad. I am trying to make every minute count and every minute isnt enough for me.
    I pray for the families just like mine who are traveling down the same dark road. I pray for the batten soldiers who go to war every day and dont even know they are defeated. I pray for the rest of the world who dont even know that they can make a difference if we can just get some funding to the right places, such as bio-marin. I pray and I pray….
    Im Jovans Grandma and Im supposed to make everything good for him… and I cant … so I pray some more..
    God Bless us all …. I hope this “batten” voice gets louder and stronger and someone hears us and helps make a difference…
    I love you all … Lori Allen

    ps… To the families who lost their loved ones …Im so sorry …and to the rest of us who will lose this battle … May God give us strength to make it through another day ❤

    • teamtilda February 16, 2013 at 4:30 pm #

      Hi Lori,
      I am so sorry to hear of your grandson’s diagnosis. You are right that there is nothing positive in this disease – the only ray of light has been the extraordinary families that I have met along the way. Inspiring, comforting and in this together. I agree that the Batten voice needs to be much louder and stronger and hopefully, one day, it can be beaten.
      Thank for your comments.
      lots of love and strength
      Laura ox

  3. Adam and cheryl February 17, 2013 at 7:49 am #

    I just had a cold shiver, but one of the good ones, reading and thinking about Matilda’s laugh. I know it must be so very hard to see Tilda at her worst, but her infectious giggle sometimes seems it could solve any of the worlds problems. Hope the four of you are well, must be hard when the battens community gets smaller. Keep strong Laura, your the most amazing mother I know!

  4. JessB (Kate's friend) February 17, 2013 at 11:45 am #

    Thinking of you Laura, and all those who have lost someone through Battens.

    Gee, that giggle of Tilda’s makes up for a lot, though!

  5. Anne Bunting February 17, 2013 at 2:29 pm #

    Dear Laura, no one can possibly know how they will act in face of tragedy or crisis just as we cannot know the pressures you are under on a daily / hourly basis. I think I can speak for all your friends and family though in saying that no one will judge you in any way except with the greatest admiration. Tilda’s smile is a delight and obviously gives you the strength to just keep keeping on. Love always Anne

  6. Cally February 18, 2013 at 5:36 am #

    Dear Laura,

    I can only imagine what it must be like to hear about the others with Batten’s and to look at darling Tilda and think.
    And in the middle of the sadness- a lovely smile
    And a darling baby.
    Life is so bloody complex.

    Your writing touched me at a deep level.
    I don’t know what to say except keep going my dear friend.
    We are the shadows in the back ground- witness to your struggle- and urging you and Simon to “hang in there”.

    Love Cally Xx

  7. Juliet February 18, 2013 at 8:38 am #

    All my thoughts are with you all. I know you will make all the right decisions and am so glad that Tilda’s once more enjoying school!
    All my love

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