Thursday 27th November 2014 ~ Today I went to the children's palliative care conference "Leaders of Care - for equity, effectiveness and efficiency in children’s palliative care" run by Together for Short Lives to give a speech with my hospice nurse on transition.…
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…
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…
We have been fundraising over the past few months for an off-roading wheelchair to allow me to walk Molly more easily and to allow me to go off the path as well as opening up more walks to us as…
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…
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…
I remember the day I first used a wheelchair. It was February 2008, and I hated it. I mean I really hated it. I didn’t want anyone to see me, so much so I refused to go out in case…
Jessica, Share a Star founder, and I’s paths only crossed recently. She saw I was going through a hard time and, with her generous heart, asked if I’d like to be a star. I knew little about Share a Star…
You cope so well! I couldn’t cope with all that you do. You must be so brave. How do you do it? We’ve all heard it. When you’re ill (or anything adverse happens), people will ask you how you cope with…
It is hard to overcome an illness when it imposes so many limitations and treatments/problems demand such a lot of time throughout the day (and night). Some days it seems impossible. I’ve been ill for six years and eight months…