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The J’s Hospice Charity Ball Speech

Bev (left), Mum Kate and I22nd November 2014 - I attended The J's Hospice Charity Ball in the role of guest speaker and had a wonderful night. I spoke about my care from The J's and how they have helped…

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Children’s Health and Wellbeing Takeover Day – My Speech

19th November 2014 - I gave a speech at the Children's Health and Wellbeing Partnership Takeover Day at the Department of Health. The event was organised to draw together important paediatric and child health professionals with young people and to work together…

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Chronic Intestinal Pseudo Obstruction and Motility Disorders Explained

Chronic Intestinal Pseudo ObstructionChronic Intestinal Pseudo Obstruction. Quite a mouthful, huh? Believe me, it's a lot harder to live with than it is to say it. Chronic Intestinal Pseudo Obstruction (abbreviated CIPs or CIPO) is a condition of the digestive tract…

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Finding Rainbows

Fifty-five thousand. 55,000! That’s how many views this blog has amassed at the time of writing this post. 55,000 people over the past 22 months have read my blog, or at least one of my posts. That’s 55,000 people educated…

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SEND, Transition and Outcomes for Young People

The transition period is a difficult time. Young people have enough going on in their lives, so to be poorly and/or disabled just adds another dimension. Then when you factor in the change from children’s to adult’s services, it’s a…

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The Listening Project: Living While Dying

Earlier this year I went to the BBC studios to do a recorded conversation for The British Library and BBC Radio 4 as part of The Listening Project. It will be archive for many years to come in The British Library. Mum…

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Jeans for Genes Day 2014

Today, Friday 19th September 2014, is Jeans for Genes day. Jeans for Genes is an annual fundraiser for Genetic Disorders UK to change the world for those living with genetic disorders. People pay to wear jeans at school or work…

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Turning 21 – The Journey into Adulthood

Sunday 14th September 2014 - It’s my 21st birthday on the 2nd October, and I am truly grateful I am here to reach this milestone. Every birthday is a milestone for us, but turning 21 is a huge one. For someone…

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