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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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Leaders of Care: Speech on Transition

Thursday 27th November 2014 ~ Today I went to the children's palliative care conference "Leaders of Care - for equity, effectiveness and efficiency in children’s palliative care" run by Together for Short Lives to give a speech with my hospice nurse on transition.…

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Overcoming Obstacles

It is hard to overcome an illness when it imposes so many limitations and treatments/problems demand such a lot of time throughout the day (and night). Some days it seems impossible. I’ve been ill for six years and eight months…

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Update – July 2014

This is a post about my health (be warned, it’s a long one, I’ve tried to trim it down as much as I can) (it’s also a bit graphic, so perhaps don’t read this before/while eating). For better explanations of…

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