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Monday, 16 January 2012


This week very soon, we have two very important meetings, one with SMA milk and the other with Mr. Nick Clegg, and I still wondered, how did it happen?

I started blogging when Estella was diagnosed, as a therapy sometimes, as a denial of her condition others. When Estella was diagnosed (it seems so far away now)  we had a plan, she was going to be a type II whose life expectancy is considerably longer and in the meantime a cure would be found and we would live happily everafter. That is what the first part of the blog was about.
Then one afternoon in June Estella went into respiratory arrest and I had to call 999. It was so sudden than when it happened I was Skyping with my dad who was in Spain, he was the one who told me to call the paramedics, because he is a doctor and he could see how his only grandchild was getting worse in a question of seconds. I describe that day as the worst of my life and the beggining of the "journey".
We made it through hospital somehow, she was a fighter, and although her body was getting weaker she had such a will to live... from that period I just wrote one blog to thank staff at the Children's for giving us more time with her.
I didn't know then but we barely had 3 months left, the last two we had to spend at Bluebell because Estella was too fragile. There was when we really started the SMASH SMA campaing. 10 days before she died Tom started writing in twiter and I followed in facebook, the day before she died Estephen Fry retwited. When Estella passed away in my arms I remember telling her "Twinklebell, the clapping is for you" because Tom's phone wouldn't stop ringing, one bell, one follower...
And then, you know the rest, more than 12,000 followers in both social networks, and everytime we get a new follower our Tink smiles, I know she does.
So how did it happen? I took for granted that getting meetings with multinationals and the Deputy Prime Minister was easy... aparently is not only difficult but almost impossible. So how did it happen?
 I think that even when Estella has very stubborn parents who won't give up because they don't have nothing to lose (just the smile and nobody can't take that from us), and the Tink's eyes are magical and make people melt and help her and feel her as part of their own family (we have been fostered by many of you). I think that all this happened because of you, the more than 12,000 people and counting that want to kick SMA where I'm not allowed to write. All this Mayhem, all this hope, all this opportunities to change things that we seem to keep on having is thanks to you all
Thank you for making it happen x


  1. Beautiful as always Maria. All of us followers and supporter of SMASHSMA are inspired to help kleep the campaign strong because of you and Tom- your strength, postitivity and inspiration. The one thing I know is your gorgeous and beautiful princess is so very proud. Much love and I have my fingers and toes crossed for the two BIG meetings xxxxxxx

  2. Im here reading this in floods of tears. Im a father to a baby girl and no parent should see there child pass away. Im not majorley religious but god bless you both stay strong and united together and she is in a good place at rest xxx

  3. Beautiful words from a beautiful family,your little Tinker must be so proud of how hard you are fighting to smash SMA xxx