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…
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…
It's Dying Matters Awareness Week (18-24th May 2015). This year’s theme is Talk, Plan, Live. This is my way of showing support and encouraging people to make plans for when they die. Knowing you will die earlier than normal, for some…
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…
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…
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,…
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…
Chronic Intestinal Pseudo ObstructionChronic Intestinal Pseudo Obstruction. Quite a mouthful, huh? Believe me, it's a lot harder to live with than it is to say it. Chronic Intestinal Pseudo Obstruction (abbreviated CIPs or CIPO) is a condition of the digestive tract…