Welcome to the Lucy's Light blog

Rare Disease Day 2017 – Do You Care About Rare?

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…

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For The 49,000 – House of Commons Reception for Together for Short Lives

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…

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Molly Awarded the ‘Animal OBE’, the PDSA Order of Merit

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…

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2016 – Reflecting On A Year Of Incredible Highs and Terrible Lows

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…

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Six Months Ago – Looking Back On This Year

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…

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More Questions, More Tests But Hopeful For Answers – Health Update 10-11-16

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…

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#ANurse4TheJs – Help Me Raise £40,000 To Fund A Nurse For The J’s Hospice

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…

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Be Your Client’s Hero – National Advocacy Conference 2016

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…

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