Today in Prime Minister’s Question Time, a Member of Parliament raised a question about one of his constituents who, like me, has neck instabilities caused by EDS and is also having to crowdfund for …
Back on 9th May, the proceeds from the first night of Lee Mack, Rob Brydon and David Mitchell’s tour ‘Town To Town’ were going to be split between our fundraiser and another worthy cause. We …
View the full playlist: https://www.youtube.com/watch?v=kld5_rNCe7M&list=PLQojWy4LtIok9AwWr0YmMUW9gir5krUsv If you want to catch up with the full evening of entertainment, you can watch it in its glorious entirety in the video above. Settle down for a two and …
Join us live on YouTube at 6pm GMT, Sunday 29th November for an evening of fun: sketches, music, poems, games, stories and more! With a host of big names and stars. It can be watched …
I have deteriorated further. My neck keeps subluxing and breaking away further in a particular direction and my skull rolls about independently on the pillow so I can’t ever keep it still or safe. It’s …
As you would have gathered from the post-surgery update (you can read it here), I desperately need another operation to fix what happened in the last one and being fused into the wrong position without …
We are in a state of shock and devastation. Jenny immediately knew after the operation (an occipitocervical fusion and also a posterior fossa decompression) that something was very wrong but wasn’t able to communicate it …
I have no wit, no words, no tears; My heart within me like a stone Is numb’d too much for hopes or fears; Look right, look left, I dwell alone ~ Christina Rossetti My …
These are my best and worst books, films, television programmes, sport and videos of 2018
I was trying to wait until we had more definite information and a firm plan of action until I posted an update but so many of you have been asking how I am (thank …