The Gift Of Life
Most of you reading this will know my story, my struggles and my successes. I'm not here to recount them to you. However, it's my 23rd birthday today. Big deal, right? I'm only 23. The thing is, it is a…
Most of you reading this will know my story, my struggles and my successes. I'm not here to recount them to you. However, it's my 23rd birthday today. Big deal, right? I'm only 23. The thing is, it is a…
You see me at my worst. You see me stuck in a bed in hospital, in pain, struggling, fighting repeated bouts of sepsis, reliant on more IVs and pumps than I already am at home, covered in bags and tubes…
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…
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…
It’s Children’s Hospice Week this week (23rd-29th May 2016). It’s an annual week-long event and the aim of children’s hospice week is to raise awareness of the services that support children with life-shortening conditions and their families. This year’s theme is…
Dying Matters Awareness Week 2016The Big Conversation We all have wishes, preferences and we know what we want. We make our own choices, we decide what we do and when, we make our own plans for our lives, we choose which…
It’s no secret if you know me that I have a life-limiting/life-threatening form of a condition known as Ehlers-Danlos Syndrome. Sadly, though some people with the condition can lead a normal (or relatively normal) life, for me it has caused…
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…
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…