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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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Total Reached, New Chair Is Here – Lucy’s Wheelchair Appeal

WE'VE REACHED THE TARGET! Thanks to your donations and a very big donation from a very generous group of people. Thank you so, so, so much, gratitude isn't strong enough and I cannot say thank you enough - it doesn't…

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Lucy’s Wheelchair Appeal

To my wonderful followers, friends and family, I am writing to you in a desperate situation. I need a new wheelchair but the one I need has a cost of £22,412.39 and we cannot afford this nor will the NHS provide it. So…

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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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Pseudo Obstruction Research Trust – Donate By Text

Christmas is a time for sharing and giving and being with family and friends.  Christmas day arrives and the celebrations begin.  Please spare a thought for those who will not be able to sit and enjoy a Christmas dinner with…

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