Merry Christmas to my wonderful followers and friends You not only support and care for me, but you have helped to bring my message and my experiences to a greater and greater audience. We're up to 67,000 views already, in under…
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…
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.…
Bev (left), Mum Kate and I22nd November 2014 - I attended The J's Hospice Charity Ball in the role of guest speaker and had a wonderful night. I spoke about my care from The J's and how they have helped…
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…
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…
6th September 2014I recently transitioned over to a Personal Health Budget from Social Services Direct Payments and we are still sorting out the funds and what I need as my needs are increasing greatly year on year. Direct Payments worked…
Saturday 30th August 2014To my beautiful mum, Thank you so much for all you do. You keep me alive each day physically and mentally, giving up your life to save mine. You gave me life in the beginning, and continue to…
Dr Daniel Poulter MP, did you hear me? You probably won’t remember me; I gave a speech at an event organised by Together for Short Lives in Parliament in November 2013 which you attended. You had your picture taken with…
I was asked to write a piece by the National Council for Palliative Care and Together for Short Lives about whether young people with life limiting conditions want to talk about their end of life, and if so, why, where, with who and how, and if…