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,…
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…
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…
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…
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…
Today is rare disease day. I have a few rare diseases, so jeans for genes day is very important. Ehlers-Danlos Syndrome, though the hypermobility type is becoming more common, is considered a rare disease with a prevalence of 1 in…