Thursday, August 8, 2013


It's been awhile

Three things happened during the last week that have occasioned this blog.

Firstly we were in Seville for a break and had gone to Estella's fountain. We bought her her usual present and put it in the water. It was a water pistol because I imagine she's rather cheeky by now and I had a trial shooting water at her Mummy to amuse her. As we left Maria asked why I had not taken photos this time for Twitter and I said it did not feel right. She was happy and said that it was a sign that she was becoming our daughter again and not a symbol for a campaign.

Secondly we heard from the organisation that are doing the consultation into screening for SMA that we had been fighting for. They apologised for overlooking us in the consultation process and suggested that they would extend the consultation by two months. All I could think was that would be another two month delay until the outcomes were realised and I also decided that i think I have said all I want to say.

Thirdly - It is SMA awareness month. I found this out from my own twitter account on August 7th. It was then that I realised I was no longer paying the attention that was needed to an account with 44,000 followers. I simply couldn't find the 2-3 hours a day I used to find.

All of this sounds as though I am ending the SMASHSMA campaign.

I'm not.

I intend to raise funds when I can. I intend to spread awareness, I will be there instantly if any parents ever needs help or support, I intend to carry on raising the matter with the government but I feel sure you can see I have not been around as much lately and wanted to explain that the moments we are sharing with Cristina are absolute heaven and I would be wrong to use my energy fighting SMA each and every day. I need to be a lot more focused. Cristina is bringing so much joy and yet it is tinged with sadness. I watch her now starting to crawl and laughing and holding her own spoon and I realise more than ever how poorly Estella was. I see what was going on in her head and it makes me cry. It strips me down to the same raw feeling that we had when Estella died.

I promised Esetlla that I would do all I could to rid the world of this terrible disease and I'm not giving up on that but I am saying that there will not be 50 tweets a day anymore.

It's more than a matter of time though

I have called this blog Heroes - because of the people we have met along the way. The individuals and organisations who have done so much to spread the SMA awareness story. I'm not going to start listing because I will miss somebody out and I would hate to do that. We have met some exceptional people and had extraordinary support. We have had one organisation ( Morrison Facility Services) that have spent a fortune - we have had individuals who have tweeted all night every night for month after month, we have had some medical support while Estella was alive from people who loved her and became friends.

There have been low points. The cynical politician who tried to hijack the story, the celebrity who disappeared and some amazing behaviour from the charities that are supposed to be fighting this disease. It would be churlish to go into detail but if I have had one single life-changing experience it has been with the incompetence demonstrated by a major SMA support charity. I genuinely believe that it is not from lack of money that SMA is not cured yet but from a lack of direction , intelligence, innovation and desire from some of the most unprofessional morons it has ever been my displeasure to speak with. They know who they are.
Time wasters - money wasters - life wasters. Shameless

Let's not end this blog with that bitterness that i feel towards some of the organisations.

It's called HEROES for a reason.

Let's end with an abiding thought of the sweet, dear little girl that this is all about. Our Estella was an exceptional person by any standard. She lived a  short and meaningful life and she made a difference to so many people. She inspired, she entertained and she shone like an absolute burning star.

I miss her every day. I think of her constantly and I would give my heart and soul for another ten minutes with her. She never ran, she never sang, she never stood and played with a ball - but she is in my heart and my mind and my life. She was born with the cruellest , most wicked , disease it is possible to imagine and yet she smiled and brought so much happiness into our lives.

Estella means star.

There are so many stars in the sky. There are children everyday who are dying from this disease. I will continue to do what I can - but - it's not my life anymore, it's not my reason for being anymore - remembering Estella and loving my time with Cristina and Maria is my life now. They're my three girls. They're my life - and SMA is a dirty , nasty - naughty little disease. If we can make something of this life and find happiness then Estella beat SMA. If we can be happy then that little heroic girl did something that I could not.

She smashed SMA

Thankyou for listening

And for all your kindness to my family

May you always be happy.