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Email: support@total.com
Phone: 1-800-Total-Theme
Address: Las Vegas, Nevada

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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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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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Children’s Health and Wellbeing Takeover Day – My Speech

19th November 2014 - I gave a speech at the Children's Health and Wellbeing Partnership Takeover Day at the Department of Health. The event was organised to draw together important paediatric and child health professionals with young people and to work together…

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SEND, Transition and Outcomes for Young People

The transition period is a difficult time. Young people have enough going on in their lives, so to be poorly and/or disabled just adds another dimension. Then when you factor in the change from children’s to adult’s services, it’s a…

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Jeans for Genes Day 2014

Today, Friday 19th September 2014, is Jeans for Genes day. Jeans for Genes is an annual fundraiser for Genetic Disorders UK to change the world for those living with genetic disorders. People pay to wear jeans at school or work…

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Speech for the Children’s and Young People’s Health Outcomes Forum

My name is Lucy, I’m 20 years old and I have a life limiting condition. You probably won’t have heard of it, it’s called Ehlers-Danlos Syndrome (EDS). It’s considered rare, but is becoming more prevalent as awareness and understanding of…

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