Friday, December 9, 2011


With a little luck we will go over 8000 followers by the end of this weekend. Well actually its nothing to do with luck I guess. Its down to the enthusiasm and sheer dedication of some of the most amazing people I have ever met.

I sat there today wondering why this is happening.

I camr to a conclusion that may sound very biased but it is based on what I saw happen while Estella was alive.

She had something very special about her where she seemed to win the hearts of people very quickly and very truthfully . There was something amazing in her eyes. We know that children with SMA overcompensate with purer emotions and oodles of intelligence but there was always something special about Esttella.

 She knew how upset we were that she was dying and sometimes she would give you a look that melted the heart and sank into your soul. A look that said - Its going to be Ok. I am going to leave you but I have had a wonderful life with so much love and so many experiences. We told her right from the start that we would fight while she fought but that when she was tired she would have to tell us and then we could say goodbye.

She came close to death several times and bounced back - confounding Doctors and experts but on the day she died her eyes were saying goodbye.

My point is that somehow that depth and that vision and that purity come across to those who never met her. Maria says often that Estella was not a little angel -she was a little bugger. She played with us and made our emotions dance and cried with us

but in the end she helped us while she left us. She helped us by leaving with no pain and no drama and no horrific tubes and pipes and medical nonsense. She left us because she agreed that it was time to go

And that was the only way I could ever saysgoodbye
and that was the only way I could ever sleep or smile again
And that was the only way that our little tinker showed that she loved us beyond love.

Am I suprised that people are doing so much to help us ? Oh yes

Am i suprised that they do so much for the dearest sweetest girl I ever met ?

Not one bit.

You are exceptional people. You are changing the world and if one day a baby lives because of you and because of us and because of Estella

Then this is fair - and this is just - and this is beautiful

Thankyou xx


  1. Estella deserves her followers. But she also needs Muppet Daddy & Mummy to be strong, they are doing so much for her right now. She also has a lot of people doing the same for her parents to help them via support & awareness to smash SMA! xxx

  2. I've never had the fortune to meet Estella, or her amazing parents. In fact I first heard of her through a Tweet from Stephen Fry.
    Maybe its because she shared the same brown eyes and chubby cheeks as my own baby girl or maybe it was her deep soulful eyes urging me to act. I can never say what it was but this has touched me like nothing has before, she was alive when I started reading about her happy days and when they ended that Sunday I was as upset as if I knew her. Which is why I vowed to help stop this having happen to anyone elses family. Thank you Estella for changing my view of life, and I promise I will do my utmost to help you win this war against SMA.
    Shine bright little star xxx

  3. Well done guys on all your work this week.You are making such strides raising awareness about SMA, and ultimately saving other families from such heartbreak. And all while you live with the reality of your loss.

    Estella was a strong and tenacious little woman - and I'm guessing she owes this to you both. Estella was amazing but so are you both. The honesty and humanity of your messages show not only how much you loved your girl but how much you love each other. Ultimately that is how you will get through this.

    The cruelest part of genetic disorders such as SMA is the randomness at which they occur. For my part, when I read your messages, I know that I could be you and you could be me. I think this resonates with every follower of estellastar1; everyone who RT's for us; and everyone who gets misty eyed hearing Twinkle Twinkle.

    Estella's story, told through your pictures and words, have captured hearts and made sure that friends and strangers alike want to do all in their power to help you.

    Simply its not down to her and its not down to you. Its the three of you.

    Let's keep going... much love xx Helen, Dublin

  4. People want to help because let's face it, any one of us could be a carrier, some of us have our own battles to fight with our children - myself included - and I for one no how hard it is to make people listen to you and hear you when asking please help me because the ones that help are the ones who will help you, random strangers with faces and names willing to help you to get a message out to the world.

    I guess my reasons for helping are because in this world so many people struggle and don't get heard, but after a few voices come together the sound is hard to ignore. I'm still finding those voices everyday and so will you all as a family.

    For me it was how beautiful and happy she looks in those pictures, such a shining light that resonates through the screen simply asking nothing but for to share in the tender moment, how anyone fails to be moved by your beautiful pictures of your private special memories together is just difficult to understand.

    I know that right now you are both doing a wonderful thing for Estella not only keeping her memory alive for everyone who knew her, but for those who never got the chance to meet such a special little girl. You are both tremendous in your actions and at times I think you're just as amazing as all the followers, you are both an inspiration to us all and thanks to this wonderful little angel who briefly came to share her smiles with the world, we see her strength and courage from you both. You guys are just so wonderful and I feel lucky to have been able to share a piece of your memories and feel the love you all have for Estella xxx

  5. I see where Estella got her wisdom. What a beautiful way to describe her... I hope you can keep these exact words in mind during tough days. You are an extraordinary family. xx

  6. Wonderful heartfelt writing. Thank you for sharing with us. Estella was a very special little girl and no wonder with such special parents