I’m a 24 year old young lady with a life-limiting condition that has caused complex physical and medical needs. I am completely dependent on a specialist electric wheelchair, although forced to spend a lot of time in bed, I require…
(c) UK Sepsis TrustSeptember is Sepsis Awareness Month and Wednesday 13th September is this year's World Sepsis Day. My family has been touched by sepsis a number of times. We know too well how serious sepsis is. There’s an estimated…
One year ago today, Molly qualified as my Assistance Dog. What was almost three years of hard work, culminated in us passing our level 3 assessment. I will admit, there were times where I thought Molly would never make it. We…
So, last week (6th-12th August) was International Assistance Dog Week. IADW is an awareness week educating others about Assistance Dogs and what they do and celebrates how they transform lives. Molly and I have done all we can to raise awareness…
Charlie Gard. A little boy whose care has polarised the world. A little boy with a severe condition called infantile encephalomyopathic Mitochondrial DNA Depletion Syndrome. He sadly passed away last week. His doctors for months had wanted to remove his…
Many of you will know, in November 2016 it was confirmed that I have some form of neuromuscular disease by the fantastic team at the National Hospital for Neurology and Neurosurgery (NHNN) and would be embarking on a long process…
On Tuesday 4th April, my hospice nurse Nicky and I sat down and talked the nitty gritty. We talked about how I am, what I've been up to, what's troubling me - the same as always. Then the conversation got…
According to Rare Disease UK, rare diseases affect 1 in 17 of us at some point in our lifetime, which translates to 7% of the population being affected by a rare disease during their life. This equates to 3.5 million…
On Tuesday 7th February 2017, I attended my third event at the House of Commons for Together for Short Lives, with the theme of #forthe49000. The event was hosted by Stuart Andrew MP. A fantastic day was had by us…
Here's the video from our interview on the Dave Monks Show on BBC Essex.