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

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On Turning 25 (Tuesday 2nd October)

On Tuesday 2nd October it was my birthday; a birthday I was not expected to reach. I turned 25; which is at least 2 years longer than I was expected to reach. I’ve lived a quarter of a century! At…

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Receiving my Honorary Degree of Master of the University from the Open University – 21/09/18

On Friday 21st September 2018 I received a prestigious accolade: I was awarded an Honorary Degree of Master of the University from the Open University, for commitment to public services. What an incredible thing to receive, to be recognised in…

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Our Trip To WOMAD with Festival Spirit & St Christopher’s Hospice

  This weekend, for the first time in a long time, I was simply a young adult. A festival-goer just like everyone else. Thanks to two incredible charities, Festival Spirit and St Christopher’s Hospice, I was able to go to…

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Hope For A Diagnosis: My NMCCC Admission March 2018 for a Muscle Biopsy

This week I was admitted to the Neuromuscular Complex Care Centre (NMCCC) at the National Hospital for Neurology and Neurosurgery, Queen Square (NHNN). This admission was for my muscle biopsy, long awaited - I’ve been waiting since 2016, and we…

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To Friendship & A Collaborative Partnership; My Meeting with Dr Tedros, Director General of the World Health Organisation

Today I had the greatest pleasure of a personal meeting with Dr Tedros, Director General of the World Health Organisation (WHO) regarding my palliative care advocacy work and ensuring that palliative care gets included in universal health coverage packages. The…

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Becoming Lucy Watts MBE – My Day At Buckingham Palace

In the New Years Honours 2016, I was appointed Member of the Most Excellent Order of the British Empire for my services to Young People with Disabilities. Then on Thursday 9th June 2016, I received my MBE in my Investiture…

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Supporting Unpaid Carers: What Happens When A Carer Gets Sick?

I’m not sure why society is not better equipped to support unpaid carers. Why they are so often undervalued. They save the UK on average £132 billion a year, the cost of running a second NHS, so why do we…

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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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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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