Batten Awareness Weekend and D-Day

2 Jun

Yesterday and today have been better days! The fever has not returned and there has been no more vomiting. I can only put it down to a bug of some sort that has now worked its way through her system. I am still not giving her full feeds yet and have slowed the rate right down – so far, so good. A return to smiles and happiness for all. My mild panic remains, as always, but it is really just something to live with. Thank you so much to everyone for your kind comments and well wishes – the fight goes on.

Today it is 1 year since we received Matilda’s diagnosis. 1 year since learning that our child had a disease that was always fatal and had no cure.  In some ways, I can’t believe it is already a year and in other ways, I can’t believe that it has ONLY been a year. This time last year, Matilda was walking and talking and eating. And doing roly polys. Those things have all stopped. But the child we are left with is still so full of joy and deliciousness that we can stay strong and try and soak every inch of her up for as long as we possibly can.

Not only is today Diagnosis Day or D-Day, but this weekend also happens to be World Batten Awareness weekend. With that in mind, I thought I might share with you some links to other Batten blogs. Blogs that I devoured during those first few months of horribleness, searching for clues to what this disease meant. These blogs inspired me, terrified me and ultimately lead me to starting Team Tilda. There are too many families fighting this disease – if you get a chance this weekend to tell someone about Batten Disease or about Tilda or about any of the families that I am linking to, then that is something, a start.

Tatyanna’s Hope

Holding on to Kate

Kaitlin’s Journey

Hope 4 Bridget

Write the Happy Ending

and far too many more.

Once again, I thank you for your continuous support and love and kindnesses. We are eternally grateful to have so many amazing family members and friends surrounding us.

Much love




8 Responses to “Batten Awareness Weekend and D-Day”

  1. Pete and Kat June 2, 2012 at 8:15 pm #

    Very glad to hear that the smiles are coming back… Was great catching up with you all the other day – love, Pete and Kat

  2. Benita June 2, 2012 at 10:30 pm #

    Hi lovely lady, so pleased last couple of days have been brighter. Thank you for link to other blogs. Almost didn’t want to read them but it is amazing the common themes that run so deep between them all…the utter shittiness of the impact of this disease but always a sense of finding joy in the small things and hope and the amazing, unstoppable love of a parent. What you are doing will make a difference Laura.

  3. Anne-Marie June 2, 2012 at 11:07 pm #

    Laura – I can’t believe it’s been a year already…. You and the delicious Tilda are in our thoughts often. With lots of love, Anne-Marie (& Ben) x

  4. Margaret black June 3, 2012 at 2:14 am #

    Dear Lauly
    IAm very pleased that Tilda is so much brighter.
    Thinking of you very much from sunny France
    Lots of love

  5. Anne Bunting June 3, 2012 at 4:15 pm #

    Dear Laura,
    Your last 2 blogs remind me of the constant pressure you must be under and how little we can do to help except the occasional words- there are so many times that I think of you and wonder at your powers of resilience. each Monday we have a staff briefing and tomorrow I am planning to remind the staff of Battens and it’s dreadful legacy but also of your ability to just get on with every day. I did a session earlier to coincide with your radio interview and showed them your beautiful ‘the Tildaness of Tilda’ film.
    love always Anne

  6. cally berryman June 3, 2012 at 4:31 pm #

    How you do it I do not know- to keep sane and human -when all around is pain and sad.
    I agree totally with Ann Bunting- the constant pressure must be exhausting.
    Still you find time to honour each joy and smile of Tilda’s.

    I hope Tilda is still loving Dora.
    Each time I see a Dora book, picture – I think of Tilda laughing and enjoying the same.

    Thank you for sharing the other stories of children with Batten’s. It is so totally unfair.
    Thank you also for reminding me that each precicisous moment is magnificant.
    Love you
    Cally X

  7. Didi June 5, 2012 at 10:05 am #

    Oh my dear Laura I am so sorry that you have had such a shitty time as of late but I’mglad all is better now. Oh how I wish I could be there for you in person instead of half a world away. Hang in there and continue being strong even though it is ok to cry at times. Know I am thinking of you and Tilda always. With all my love Didi

  8. Kym June 8, 2012 at 1:03 pm #

    every time I read the blog, I sit for ages staring at the screen wondering what to say and how to say it. I’ll take a page out of your book and say what real, and that is I dearly wish I could turn back time and do things very differently in regards to our friendship in Darwin, I will also say it isnt fair and it really sucks but I know that when I used to see you and matilda together I used to think I wish I could be as loving and conected as you and Matilda are with my kids, you were both like a little old couple in Darwin with your set routines and looks between you, I remember you with Matilda in the pool and my kids like a hurricane all round you always kept your focus on her no matter what was happening, your a great mum to Matilda

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