Elin Rose Appeal

I am devastated to say that in the early hours of Friday 22nd May Elin took her last breaths. She had been getting more and more poorly over the preceding fortnight, and she died with Reddy in her arms and her mother and father beside her telling her they loved her.

The wonderful nurses from The Royal Alex in Brighton, The Royal Marsden in Surrey and the charity Demelza visited everyday to make her comfortable and gave untold support. We will be forever grateful for their help and their love and compassion.

The pain of her loss is of course very difficult to bear. As we look back over her life, through the many thousands of pictures we have of a life most extraordinary, we are struck by her generosity of spirit, her zest for life and learning, and her fierce determination, all of which were apparent in her final days.

As a big sister she was proud and loyal and she worshipped Nia as much as Nia worshipped her. As a daughter she blessed our lives with her warmth and humour, she showed us how to live and taught us how to face the world - with a smile, with love and with untold joy.

We would like to thank each and every one of you who have read these pages, donated to Elin's appeal and shown such generosity to our family. The appeal gave us hope and as we move forward it now gives hope to others. As we have always said, any money raised which we did not use directly to help Elin would be used in the future for research into Ewing's Sarcoma. It is our hope that a more effective cure can be found - especially for those, like Elin, who find that the disease is persistent and recurrent.

Elin leaves a huge gap in our lives but she is also a shining beacon of hope, not only for others facing challenges as she did but also by way of example to anyone wishing to lead a full and rewarding life; she was ever optimistic and slowing down was not an option she ever considered.

During the Easter break, on one of our family trips to Norfolk to see William the horse, Elin and the family settled down to watch the film The Book of Life. In that film the main characters have a maxim - never retreat, never surrender. Elin liked that saying and said it to me often. It is how she wanted to live and, I think, how she would want to be remembered.