Sunday, January 27, 2013


In am writing this two weeks before going to Spain for the birth of our daughter Cristina Estella.

Maria is already in Spain. I miss her so much and am writing this for her to read too.

We have done a lot in the last year to try to give SMA the kicking it has deserved and to keep my promise to my little darling to SMASH SMA.

When I say we have done a lot it has mainly been you that has done all the work.

There have been many highlights

  • The government have met with us and agreed a consultation into SMA prevention and awareness
  • SMA has been raised in the House of Commons and there has been a reception about this dreadful disease
  • We have had the unswerving financial support of Morrison Facility Services who sponsored a banner at a football stadium in Estella's name and have provided so much more support.
  • We have met with Pfizer and they have moved from a stance of not caring that SMA ( milk ) had the same name as SMA ( disease ) to selling their milk brand and giving 70 million to SMA research.
  • We have forged links with The Jennifer Trust and the SMA trust and believe we have had a say in a far more constructive organised response to SMA research and support
  • We have funded an assistant for the Tom Gillingwater SMA team in Edinburgh and continue to provide funds to the team that I believe are having major research breakthroughs
  • We have had our story in the Sunday People and beyond thanks to the treasured involvement of Natalie Cassidy
  • We have had the support of far too many celebrities to mention them all with over 1000 now having mentioned SMA on Twitter and facebook.
  • We have 42000 Twitter followers and 3000 on Facebook
  • We have provided funds to the Jennifer Trust and Bluebell Wood
  • We have been gifted 1,000 wrist bands and envelopes to raise money for SMA research
  • We have (sadly ) given advice and support to dozens of parents who have had their child diagnosed with SMA during the last year
But the real highlight

The real highlight is that we are having a baby next month who is free from SMA. The real highlight is that the most natural, gifted, wonderful Mum I have ever seen will be a Mum again and I can see her face smile. The real highlight is that we will never forget our little Tinker but we know that she has supported us on hundreds of occasions during the last year and she would want her Mummy to be happy. We are going to have a baby.

Maria has been an absolute rock throughout everything. I have seen her low but all she ever thinks about is her Mum and Dad and me and how we feel. All the while she is a Mum who lost her child. She is the best wife anyone can have but she is also a natural and perfect Mummy. Don't tell her I said so though :)

There's an elephant in the room question though. Somebody said to me the other day. How does it feel knowing you are going to be a Dad again? There's the question - because I can tell you this - I don't think that even during my darkest moments I have stopped being a Dad. When I was most down you wonderful people sent messages saying that I was still Estella's Daddy and that I always would be. There are no words to explain the good that your messages did.

I can't see my little girl anymore. I will never see her run or play or laugh . I never heard her say Daddy. I am sure having Cristina will be amazing and wonderful - and I'm not a fruitcake - I know she is a different child but as I watch her grow and as I play with her and as I tell her tales please forgive me the odd moment when I remember another little girl who was and always will be my entire world. I have thought long and hard about which songs to sing and which tales to tell and I have decided they will be the same ones because that way I can sing again and that way i can read again and that way both my little girls will always be with me . i hope that makes some kind of sense.

The biggest kicking we have given to SMA is to tell it that it will not end our lives and it will not take away every memory of my darling Estella and it will not stop us from loving and living again. I hope that at least one parent reads this who is currently in a dark place and if that's you I can tell you this...

The sun does rise in the morning. The pain never goes away
The memories will become kinder. You will smile again.

I know what you're thinking. How can you smile again without your treasure and isn't it disrespectful to them and their life for you to be happy.

It's a simple answer but one I walked thousands of miles for

It is disrespectful to them for you NOT to be happy.

My little girl looks down on me every day. She does not judge or think I have forgotten her because I groan when Manchester City lose. She does not think that I have better things to be bothered about than worrying about the snow. She does not mind the idea of another baby wearing her clothes and playing with her toys. Estella was not like that. She would want life to go on as normally as possible.

Do you know why ?

Because we loved each other then - and we still love each other now and didn't somebody once say

Love is never having to say you're sorry ?

It is disrespectful to them for you NOT to be happy.

In a couple of weeks time we are having a baby. We could not be happier

Every moment that we shared with Estella remains. Every morning play, every silly song, every heart rending stroke of her little cheek.

Take a look at the photo below. That's my big stupid hand and that's Estella's trying to grip my finger. That's Mr Giraffe watching.

I'm looking a my empty hand now and I can still feel the touch of her little fingers. If I close my eyes and try with all my heart I can still feel her hand in mine. Then she is not gone. Then she is always here.

And because she was here there may soon be other babies who can stay with their Daddy for a wee while longer. There may be other babies who will hear a few more songs and listen to a few more tales. Because Estella existed and because her spirit and her love continues to exist.

Take That,  SMA - she's beating you. Oh yes she is



  1. I'm so very sorry for your loss. While I cannot imagine the heartache you've enured with the loss of your precious little girl, some of what you wrote resonated very strongly with me.

    Our 10-year old boy has an unnamed disability. It presents as severe cp, for lack of a better label, but he really is undiagnosed. After years of hell--hospitalization upon hospitalization, the not knowing if we'd leaving the hospital w/out him one day, he began to stabilize. He will never be "typical" in the physical sense. Everything is a struggle for him, but we celebrate every milestone.

    Our decision to have more children was a gut-wrenching leap of faith. With no diagnosis no one could really tell us the chances of it happening again. We've gone on to have two healthy boys, but with every milestone they achieve comes sadness that our eldest will never be able to do what they can do. It's a constant emotional rollercoaster, and sadly I dont think that grieving will ever stop.

    But I just want to let you know that I think you and your wife are amazing parents. The work you've done on raising SMA awareness is incredible, even more so given the tremenous grief you carry with you.

    I admire you so much and wish you much happiness.

    Tony and Meredith

    1. How lovely of you to write. So touched by your own story. We are always here if we can ever help. Thankyou so much

    2. You are so kind. I'm following you all on Twitter and looking forward to hearing the news of sweet Christina's arrival.

      All best, Tony

  2. Such a lovely post , tears in my eyes again xx

  3. Thankyou. Don't cry. It's a happy blog x

  4. I don't have children, but have many young ones in my family, especially, triplets born to my cousin at 24 weeks who have survived against the odds. Estella was a little girl who touched my heart because of her struggle & of course yours. you have both been so strong, fighting to get SMA recognised & have done so well, so far!

    I hope all goes well with the birth of your new baby & that she will grow up remembering her big sister who fought so admirably for her life. Take care xx