Friday, January 13, 2012


When I think of Estella now it's usually something related to the SMASH SMA campaign.

I think of what's happening on Twitter or Facebook or sit trying to think how to get the petition moving. She has becom something gigantic and immense. Estella Star the baby with the thousands of followers , the baby who inspired celebrities to tweet and organisations to donate support and money.

 The thunderstorm power of her campaign and the amazing spirit , generosity and compassion of her supporters. Estella Star -shining super baby and kick SMA in the nuts campaigning angel. I write about her power and her spirit and her dignity and her passion and her wit and her charismatic charm.

Estella - an icon.

And then I remember

It's two months ago today since she died in her Mummy's arms.

 Two months since I held her for the last time and looked into those beautiful eyes. Two months since she watched the Night Garden and then told us that she needed holding and helping and releasing. Two months.

  And she was so oh so very little
And her legs bent in a froggy style
And she had little chubby fingers
And she had my nose - poor thing
And she loved watching bubbles
And she sometimes got awful wind
And she was a cheeky monkey
And she could squeeze your finger
And she watched balloons
And she had a haloween costume
And sometimes she slept in the big bed
And she had a birthday every month
And when she cried there was no sound just a single tear

Just a single tear and a look that would melt my heart.

People say I am brave and they think what we are trying to do is amazing. I always say its just what I promised her on the day that she died.

  But Once

I was walking into work at 7 in the morning.

My office was at the end of a long corridor and because I was so early there were no lights on. I had to walk very slowly with one arm outstretched trying to make sure I did not stumble. Total darkness and a foundering arm for stretching ahead. It was a couple of weeks before Estella died and as I walked down the corridor I thought of her. I thought of the journey she had to make. The journey that she had to make alone. I thought of her without Daddy and Mummy and her toys walking towards darkness and I thought that she could never turn and never come back and never come home.

All alone.

And I howled inside

What kind of Daddy can not hold her hand and walk with her and protect her and help her? What Daddy would let her walk down that corridor and not move mountains and seas and storms to help her come back home ?

And as I stared into the darkness I knew that here would come a day when I thought of my tiny darling walking that impossible walk.

Well that's today

Just a single tear and a look that would melt my heart.

I love to think of Estella now free of that tired body. I love to think of her running and dancing and singing and laughing But there are days when I see her as a 8 month old baby trying to toddle. Trying to walk down that dark corridor with her arms stretched out. Stretched out hoping to be picked up. Hoping to be cuddled. Hoping to find her Daddy.

  And I can't be there

So instead I try to hurt the dreadful disease that hurt her.

So instead I stare at clouds and wish for rainbows

So instead I think if her very day.

So instead I try to remember her not as Estella Star smasher of SMA but as my little Tinker who I love now as I loved then and will love tomorrow. This corridor us very very dark but Tinker is down there and if I keep walking

Just maybe I can pick her up and hold her and whirl her around and tell her

That I absolutely love her And that maybe one fine day

One fine day.

If I keep walking


  1. I'm breaking my heart crying here.
    There are no words - except to send my love and say that I will Facebook and Tweet the campaign. Have signed the petition.
    God bless you Estella Star.
    Muppet Daddy might not be there to hold you, but I am sure you are loved and cared for in the arms of the angels, little one

  2. *sobs* your an amazing Daddy who did everything he could for his little girl and goes on loving her. That playful cheeky little angel who plays ball and splashes in the water, singing along to the songs you sing her and listening to your every word, that wonderful little soldier girl who lived such a happy life short as it was but loved nonetheless. Her amazing strength she had giving her strength to her mummy and daddy to carry on and remember not the sadness of her leaving but the love and memories she gave, the placd she made in your hearts forever. Estella will forever live on in the hearts of many because she made a difference, she made people realise what love can do, it can move mountains, bend rivers, give light in the darkness but most of all it gives hope, a hope that one day thanks to this one little girl a cure may be found and people will know more about SMA all because of one small little person - Estella, the little Tink who had an army of stars to guide her through the darkness into the light so one more person could see the light xxxxxxx

  3. As I always say. You and Maria are amazing. You are both SO positive- tuly inspirational. Estella lived her life to the full, that is why she shines so brightly now. Amazing, amazing...think about you all everyday and have shared your story with family and friends, who also think you are both brilliant. I don't know either of you personally, although I feel like I do and I feel like I knew Estella- a gift you have both given to me. Love xxxxxxxxxxxxxx

  4. I am in floods of tears reading this. You are such amazing people and it makes me so sad to think of what happened to you and your truely beautiful daughter that it hurts and if it makes me that sad, through seeing your beautiful photos and you amazingly strong, and heartfelt words then I cannot even begin to imgine what you go through everyday. I have a baby girl, the same age as Estella would now be and she was very poorly to begin with and it makes me feel so incredibly lucky that I have her now and how I do not know if I could cope in your shoes, definitely not as wondefully a you have.

    When I think how short some lives are it makes me sure that there must be something after this, there has to be a reason for that pain. I am sure Estella is looking down on you and thanking you for being a wonderful mummy and daddy and is no longer in any pain.