On Friday 21st September 2018 I received a prestigious accolade: I was awarded an Honorary Degree of Master of the University from the Open University, for commitment to public services. What an incredible thing to receive, to be recognised in…
Well back to blogging but on my new website. I thought I’d do a post about a few awareness days/weeks/months that are current this month or fall this week. Sepsis Awareness Month First off, September is Sepsis Awareness Month. I’ve…
This week I was admitted to the Neuromuscular Complex Care Centre (NMCCC) at the National Hospital for Neurology and Neurosurgery, Queen Square (NHNN). This admission was for my muscle biopsy, long awaited - I’ve been waiting since 2016, and we…
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…
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…
Here's the video from our interview on the Dave Monks Show on BBC Essex.
In October 2016, on a sunny, day, we had a very important visitor. Jan McLoughlin, Director General at the People’s Dispensary for Sick Animals (PDSA) came round to present Molly with a very prestigious honour. In the same year as…
Customary to me, this blog reflects on what has been a very mixed year. Incredible highs, the highest of highs, and yet deep, dark, terrible lows. How can a year be so bipolar? So good, yet so bad, all at…