Monday, May 14, 2012


On Sunday it was six months since Estella passed away. People were very kind as always and we had thousands of messages and photos and balloons and candles. We spent the whole day keeping up to date with all of the very kind support.

How different to the dark November Sunday evening when we sat by her bed. She had died that afternoon and we had bathed her and dressed her for the final time. If I had to choose one moment from the whole of my experience with Estella that will live with me forever it was watching Maria bathing her little body and preparing her for her final journey. I have never seen anything as heart rendering and sad. I would give the world not to have had to see that.

The reason I am trying to smash SMA is because I do not want other parents to be there in that room holding their child for the last time. Watching the water wash over legs that can no longer splash and eyes that can no longer see. The dearest person I have ever known silenced and stayed by the most evil and damned of diseases.

I sat by her bed that night in that cold cold room and read her her story book and sang her her songs and then I got down on my knees and I apologised. I apologised to my little Tinker that there was nothing I could do to have saved her and there was nothing I could do to protect her and comfort her. There was nothing I could do.

As a Daddy that makes me feel weak. As a Daddy that means I failed. I failed because the most hideous monster that could exist came to take my daughter away and nothing I could do could win that fight. I know I tried but I was nothing compared to Maria and the amazing 24/7 care and love that she gave Estella. I could not save her. And as I knelt I promised her that i would try my very best to make sure that people heard about this disease and I would not rest until it was something that people no longer needed to hear about.

Six months on and awareness has been raised. We are putting politicians and celebrities and scientists in the same room and moving towards solutions.

That did not matter last week though.

Last week we went to the park in Spain where half of Estella's ashes sleep in a lovely fountain. We took her toys and sweeties and a balloon and sat and had a few words. A family came up, as always, and took the gifts away for another child. For another time. For another place.That felt good.

Sat there feeling warmth on my skin and cool breeze in my hair I thought of Estella and how she had always seemed to be so wise and so knowing. I looked at other children and for a moment I wondered why she could not have had more time, more experience, more life. I know the philosophical debate that she lived a full life and one without pain and that she was very loved but she deserved more- she deserved so much more.

Six months on and life is starting again. The shadows of the night are not always laced with fear and there are still rainbows and there are still moments of beauty and peace. The world is an amazing place and I was gifted for a short, too short, while with the most perfect little daughter. Her little body did not work. Her little mouth could not speak. Her little legs could not run


Once when I was sat by her side at three in the morning - trying to think of reasons to go on I sat with my head bowed. I looked up and saw that she was awake and I remember one thing.

Her little eyes could cry.

A single tear ran down her cheek and she looked at me with such love and such care and such concern. She was crying because I was sad. She was crying because I was crying. She was longing to cuddle me and make it all right.

Last week when we sat by her fountain Maria said to me that it was OK to cry but she tried her best not to because if Estella was watching she may think that we were crying because we were annoyed at her or diasppointed that she left us - and that broke my heart.

Wherever she is - six months on - wherever she sleeps - wherever she dreams she has to know one thing ... My darling little Tinker , I could not have been more proud of who you were and who you are and who you will be. No Daddy ever had a daughter so beautiful, so wise, so perfect and so capable of love.You came here for a reason little monkey and if that reason was to bring SMA to an end one day sooner and to ensure that other babies live and that other Daddies dont cry then all is fine and all is fair and all is peace.

Adn if I tell myself that then I feel Ok
And if I tell myself that I dont cry
And if I tell myself that then I will SMASH SMA

Even though its never - never- never fair.

I miss you with every heartbeat and every breath. I love you with everything I am.

I could not be prouder of the changes you are making to this world.

Maybe I failed but I know one thing. Tinker didnt think so. She forgives me

You wonderful people are helping to keep her spirit alive.


Six months on. What do I think we have achieved ?


Just love

And I would give anything I own
Give up my life, my heart, my home I would give everything I own
Just to have you back again
You taught me how to love
What it's of, what it's of
You never said too much but still you showed the way
And I knew from watching you
Nobody else could ever know
The part of me that can't let go
And I would give anything I own
Would give up my life, my heart, my home
I would give everything I own
Just to have you back again
Is there someone you know?
You're loving them so
But taking them all for granted
You may lose them one day
Someone takes them away
And they don't hear the words you long to say
And I would give anything I own
Will give up my life, my heart, my home
I would give everything I own
Just to have you back again
Just to touch you once again
Just to speak to you - words again


  1. I can't write much as i can not see my keyboard through the tears... you did not fail her... you are amazing!! I can not imagine what it must feel like to lose something so precious and i pray everyday that nothing will take my sweet baby away from me... but the both of you are just amazing!!

    You give people hope when or if their world is falling apart - i can not wait to run the half marathon in October for Estella, both of you and all the other SMA angels, estellas photo will be in my heart and i will raise as much money as i can physically squeeze out of people to help no other parents have to experience what you did.

    Please believe me when i say you did not fail her xxx

  2. Estella changed my life. Made me look at my own children differently. Made me see how serving others gives me a richer life than serving myself has ever done. She has touched so many lives and will even after this world is gone.

  3. I am reading this cuddling my four month old daughter and feeling like I am the luckiest person in the world. I will help you smash sma, whatever I can do, I will do it. Estella must be watching you both and be a very proud little girl, what wonderful, amazing parents you are. You inspire me to be like you.

    So much love to you all

  4. You did not fail as a dad you made her proud because she had a daddy like you made me cry reading that as no parent should have to go through losing a child but especially to the nasty nasty sma let's smash sma for estella and many more sma angels xx

  5. I cannot imagine how you both feel, I'm heartbroken all over again for you both.
    Please know that You're not only smashing SMA you're changing the lives of other children and families too. Changing the way we look at things, how we appreciate things and what we hold dear to us. She is a special little girl who was destined for greater things than we can ever realise.
    Sleep tight sweetheart x

  6. What a beautifully written piece. You and Maria have touched my heart and my life with your story of love and hope and determination. To fight on when your precious daughter was taken from you, to share with us your pain and your sorrow has taken such incredible courage. I'd never heard of SMA, I had no idea how many people are carriers, I didn't know what a devastating disease it is, I do now thanks to you and your darling Tinker, I've signed the petition, I tell family and friends, we are all better educated, more knowledgable. Thank you, you're a fabulous daddy.

  7. So utterly heartbreaking, no parent or child should have to go through that ever. The strength you have both drawn from such a loss is truly astounding!
    Your beautiful daughter will always live on in your hearts and now in the hearts of so many others. Her way too short but precious life is achieving so much. She is a true inspiration and you really are fulfilling your promise to her. Proud to help you smash sma in any way I can xxx

  8. This has really touched my heart, before following your accounts I never was aware of SMA, and I am so grateful that you have carried on through all the grief to raise awareness. I cannot imagine what you are going though and cannot begin to imagine the grief and hurt daily. Estella will always be in all of our hearts, and I'm sure I can speak for everyone when I say we will help you raise awareness. Xx

  9. I pray to have your strength when I lose my special sons. They,too, have a genetic condition. Your tributes are so beautiful and your dedication to ending SMA is remarkable. I know Estella is smiling beside you till you are reunited. Much love and hugs to you.

  10. I pray to have your strength when I lose my special sons. They,too, have a genetic condition. Your tributes are so beautiful and your dedication to ending SMA is remarkable. I know Estella is smiling beside you till you are reunited. Much love and hugs to you.

  11. The love you have for your beautiful daughter is truly humbling. You are both amazing people who are turning something so sad I can't even begin to comprehend it into something brilliantly positive and I admire you do much x