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.
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…
Six months ago today I went to Buckingham Palace to receive my MBE from His Royal Highness, The Prince of Wales. Six months since I became a Member of the Most Excellent Order of the British Empire at the age…
I am disabled. I am covered in tubes, bags and scars. I am perfectly imperfect, not what society defines as beautiful. I don’t feel beautiful. However, I am comfortable with myself and my body. I do not resent the way…
Today I had a very successful hospital appointment at the National Hospital for Neurology and Neurosurgery with the neuromuscular team, seeing Dr Ros Quinlivan. The outcomes of the appointment could be crucial for myself and my family, and turn everything…
The #ANurse4TheJs fundraising page is located here: https://mydonate.bt.com/fundraisers/anurse4thejsHere is our campaign video: The J’s Hospice have been supporting me since April 2011, and within the first fortnight my hospice nurse saved my life. Since then they have supported us in a…
On Thursday 13th October I attended the Be A Force For Change - National Advocacy Conference 2016 run by Kate Mercer Training. I delivered the first keynote speech on my experiences with advocacy, titled “Be Your Client’s Hero”. It was…