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The Big Conversation: Thinking about dying won’t make it happen! – Dying Matters Awareness Week 2016

Dying Matters Awareness Week 2016The Big Conversation We all have wishes, preferences and we know what we want. We make our own choices, we decide what we do and when, we make our own plans for our lives, we choose which…

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Rest in Pixels – BBC Three Documentary – How To Create and Control Your Own Digital Legacy

Late last year I did some filming with a crew for a BBC Three documentary, Rest in Pixels. This documentary delved into the world of death in the context of our online footprint, our online representation, and how this lives…

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New Years Honours – Lucy Watts MBE

To my wonderful friends, family and supporters, I have a very, very exciting announcement to make: I am now  Lucy Watts MBE I have been appointed Member of the Most Excellent Order of the British Empire (MBE) in the Queen’s New Year…

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Merry Christmas, Everyone

Merry Christmas Everyone!Thanks so much for your support throughout this amazing year. I can't quite believe all that has happened, despite the tragedies we have suffered as a family. It started with me writing the foreword to the Difficult Conversations booklet for Together…

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#HereForThe49000 – A Blog for Together for Short Lives

It’s no secret if you know me that I have a life-limiting/life-threatening form of a condition known as Ehlers-Danlos Syndrome. Sadly, though some people with the condition can lead a normal (or relatively normal) life, for me it has caused…

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Children’s Hospice Week 2015

Children’s Hospice Week, 11-17th May 2015, has almost arrived! Join us in making a difference to the lives of life-limited and life-threatened children and young people and their families in the UK and all over the world. As Ambassador (‘Young…

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Children’s Palliative Care and the NOW Campaign

I know this is slightly different and perhaps not my normal sort of blog post, but this is something that is very important to me.  I have recently been appointed Global Youth Ambassador for the ICPCN (International Children’s Palliative Care…

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Courageous Parents Network Piece

I recently wrote a piece for the Courageous Parents Network about living with a life-limiting/life threatening illness, palliative care, end of life planning and quality of life. It's a brief summary of my journey since becoming ill, the support I've had,…

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