Friday, December 23, 2011


If you are reading this then dont be annoyed - its not about you.
The very fact that you are here means that you care.
I can never - ever - get across how much the support of the wonderful people who are helping us has seen us through some very dark times.

You know who you are and you know I am talking about you


There's something I don't understand

I'm going to try to be factual and not write in my normal soppy style.

Our daughter died of a horrendous disease called SMA. She was our absolute life and a beautiful,sensitive and amazing little tinker.

We started SMASHSMA because we did not want more parents and - importantly - more babies to go through the journey we went through

The room where they tell you that your daughter is going to die
The long discussions about death and how she will die
The tubes and the machines and the hospitals and watching her slip
Seeing her almost die a half dozen times
Lay awake at night hearing the machines and watching her and praying
Praying that when the end comes it will be kind
Praying for time and moments in the sunshine
Praying for Christmas and a first birthday

We did not want parents to have to do that.

The hard bit for us is over - well as far as SMA is concerned
We are both carriers FACT
If we try for another child there is a 1 in 4 chance they will have SMA FACT
If we go down other paths we can have a child that does not have SMA FACT

We're sorted

The reason I spend 7 hours a day answering so many requests and trying for so many followers is for other parents and other children

Because if Estella has a legacy it is that she was born to reasonably articulate parents with bits of media knowledge. Maybe we can raise the profile of this awful disease

We're not asking for charity
Or pity
Or anything

We want three things

1) That every person  is TOLD by their doctor / Hospital that there is a disease called SMA and that they have a 1 in 40 chance of being a carrier
2) That every person is then GIVEN THE OPTION of a FREE test to see if they are affected.
3) By raising awareness we can bring the CURE for SMA closer than it already is.

We are having great results

The people who get up every day and tweet and tweet and tweet
The celebrities who pass on the message
The schools that now have SMA on their syllabus
The stars and candles and body writing that people are doing for Estella
The donations to BlueBell Wood and Jennifer Trust
The amazing video that Gemma made about Estella
The amazing meeting with the SMA milk people getting 25 thousand pounds for SMA research
The UK giovernment allowing a petition for FREE SCREENING
The wonderful and beautiful people who support us and write every day
The parents who have just had children with SMA that say we give them courage

Its bloody fantastic.

So what's the problem ?

The problem is that there are a lot of people who do not get it

We ask 8,200 followers on Twitter and 1,000 on FAcebook to sign a petition.

If they are not in the UK they can not do that. We get that. They then encourage UK followers to do so.


Simple Maths

If half of our followers signed the petition and asked for 10 of their followers to sign as well then we would have 44,000 signatures by now.

Remember some of our followers have 5,000 followers of their own and more.


When we ask them to retweet the petition if they all did we would reach 4.2 million people.

If those people then retweeted we would reach 325 million people

and if 1 in 3000 of them signed the petition we would then have the petition passed.

Instead we have 400 people who have signed the petition.
Instead we have 126 people who retweet the messages

I get that maybe we tweet people too much and they may get annoyed at their timelines filling.
I get that people see this as just another charity - just another cause

But thats the whole point

Its not a charity. Its a way that their children and their grand children are not born with SMA.
People kept saying to us - sympathy and saddness are fine but we need something concrete

Here is the concrete

Sign the petition  - 55 seconds
Retweet the petition 5 seconds

One minute
The world changes

You know that I try to remain positive. Our daughter is gone. She will never come back.

This campaign has helped us both - because of people like you

But when X-Factor and stray dogs and ice cream flavours and fashion tips get tweeted and trend and get millions . . .

I understand but what does it say about our humanity and our dignity.

We are trying to save the lives of other children. We are trying to do something amazing. We are trying to use social media to actually rid the world of a diesease. The disease that is the number 1 genetic killer of children.

and at the moment we are being made to feel as if we are begging

Its not you. Its not people - they are inherrantly good and caring.

We have tried to make this campaign funny, sad , heart rending , inspirational and uplifting.

Because thats what I promised my little Tinker

We have tried to touch the hearts and souls of people and asked them to cuddle their own children Oh so closely

Because thats what I promised my little Tinker

and I wont give up - and I will go on and we will smash SMA

Because thats what I promised my little Tinker

Last night I seriously considered ending this campaign - Maria told me to sleep on it

This morning I remembered that I have no right to do that.

It was never my campaign.
From the minute it began it was never our campaign.
Maria and I are not the campaign.

It's yours
It's  definitely and unquestionably . . . yours

Its hers

Don't just smash SMA - give it a bloody good kicking.

and then give it another.



  1. You are a very inspirational man, and I for one am also saddened by the lack of response by my Facebook 'friends'.

    I won't give up, and I will keep posting the petition address on my wall, and keep retweeting as much as I can. I have even put the information on my work web noticeboard.

    We WILL give SMA a bloody good kicking in the memory of a beautiful, wonderful little girl that I wish I had the honour of meeting.

  2. I have had some of the same thoughts, and it is maddening to see the nonsense that is tweeted or posted by someone right after I have sent them a message about SMA and Estella. To me, once you read one thing or see her face, you are committed for life to trying to end this disease. There are times I want to scream and cannot stand to think about it anymore when I see her face, or the faces of baby after baby who have had this terrible disease. The fact that this is not tested for, and was not even mentioned to me, who just had a baby in September, is unbelievable. And I get so angry. But you have to chip away, day by day. There will be big days like the SMA milk donation and reaching 8000 followers (remember when you were trying for 1000?) and then days when you wonder if anyone is listening. What matters is the one person you reach who will have the effect of 100 people, and there are a lot of those out there. What matters is putting SMA in the minds of people who had never heard of it before; even if they don't don't respond it may prevent one family's pain. It will take time and people reaching out in their lives, not just online. Maybe people could collect names and emails from friends and colleagues and then sign for them, instead of asking people to sign when they get home and may forget. If I lived in the UK, I would be getting the names and emails of everyone I know!

    Anyway, that's another topic... there will be stops and starts beyond the initial outpouring of support, and it will be frustrating and take time, but you are making a difference and you won't give up. It doesn't seem to be in your nature, parents who have been so strong through so much, and you won't ever give up for her. You will find many ways to make a difference, for the rest of your lives. This is only the beginning.

    Even though it is so obvious to us, if it were easy to make this change it would have been done by now. Look at what you've done in a few short weeks and persevere, and remember you have a team with you all the way.

  3. It might be slow but you will get there. Please dont give up. Your campaign has been inspirational in a short period of time. Keep believing.

  4. I will sign and hare with my friends and hope and pray that SMA is given that good kicking xx

  5. Spotted this through Sarahmumof3's Facebook page. Will also share, Tweet and do what I can to spread the word

  6. By the way, can you send me the link to the petition you want people to sign. I'd be happy to Facebook/Tweet and blog about it - and I'll get all of my family and friends to sign it