Friends

Myself and my lovely friend Claire Fernandez ran the women's Adidas 5k challenge in Hyde Park this sunday. Considering I haven't run anywhere ever this was a bit of a challenge! Originally Cecily was going to do it too but it wasn't to be this time. Instead we ran with Amber's brother - Peter, who kept us on our toes! It was a brilliant day and thank you so much to all of you who supported us.

You all know about my lovely neice and Cecily's cousin Amber who is almost 16. I can't believe she is almost sixteen because I was there when she was born all those years ago. It was magical. I remember cutting her cord and feeling overwhelmed at this tiny being and the possibilities ahead of her. I felt like a fairy godmother wishing her the wonderful things we all wish for children - an extraordinary life, joy, happiness and health.

What I didn't wish for was that just this week I would be discussing with her mother how she now needs a ventilator at night because of her terrible erratic breathing, how sometimes she looks like she had enough - enough of the horrible deterioration of her body from her growing inability to walk,of being unable to use her hands or talk or lessen the daily multitude of seizures. And that is just some of the ravaging that is Rett Syndrome. It's Rett Syndrome that has our Amber. Not Amber that has Rett Syndrome. .

And yet - there is a big and very real reason for hope. Scientists have reversed all the symptoms of rett syndrome in mouse models so are now focused on a cure rather than treatment. The Rett Syndrome Research Trust is raising money to accelerate this cure to fulfil our big hope - that we will get Amber back from Rett Syndrome. Friends please help by sponsoring me and if you have the time it would be great if you could watch the short video on this page that my sister Rachael. Thank you.

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