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…
It’s that time of year again: it’s Christmas time. Where has 2014 gone? It seems like yesterday that mum took the decorations down, and now they’re going to go back up again. Christmas is a difficult time for many people for…
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…
Earlier this year I went to the BBC studios to do a recorded conversation for The British Library and BBC Radio 4 as part of The Listening Project. It will be archive for many years to come in The British Library. Mum…
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…
Sunday 14th September 2014 - It’s my 21st birthday on the 2nd October, and I am truly grateful I am here to reach this milestone. Every birthday is a milestone for us, but turning 21 is a huge one. For someone…
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…
You cope so well! I couldn’t cope with all that you do. You must be so brave. How do you do it? We’ve all heard it. When you’re ill (or anything adverse happens), people will ask you how you cope with…
Recently there was a programme on Channel 4 called My Last Summer, about five terminally ill strangers who get together to prepare for the best death possible. We laughed with them, cried with them, watched them deteriorate and watched as…