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…
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…
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…
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…
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…
Let’s face it, we live our lives online nowadays. We post, tweet, upload photos and videos and update our status whenever we see fit, detailing our lives for our friends and followers to see. We post about what we do,…
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…