It's Daisy's birthday today.  She would have been 17, she will be forever 12.  Next year it will be five long years since I kissed h...

I'm so busy at the moment, it's crazy!  Juggling the demands of my day job three days a week with freelance commitments and campaign...

Tonight I'm thinking of the mum of the 18 year old first year nursing student who answered the ward phone during a night shift to have t...

Daisy loved school.  Nothing made her happier after a hospital stay to put on her school jumper and know that it was a school day.  Always t...

You were here and now you are gone and my arms ache for you. Did I do enough? Did you know how much I loved you? Did I spend...

It's been nearly a year now.  It's been a tough year.  So many firsts; first father's day, first mother's day, first wedding...

I'm writing this in a somewhat jetlagged state...... Yes!  I made it, following my successful crowdfunding campaign I was able to fly ...

......and so would my children We have had the conversation about what we want to happen to our organs when we die. Have you? Have you...

Today we sent a letter to our local education authority, we have made a request for yet another of our children to be assessed for support f...

Last week Daisy had her whirlwind, multidisciplinary admission into Great Ormond Street where, following gargantuan planning and co-ordinati...

Today is 5 years since I started this blog.  5 years ago, Daisy was 3 years old and was once again in hospital,in the early weeks of a stay ...

As my children grow up I find myself using some of their phrases to describe things and "dodging a bullet" really does describe...

Anyone who knows Daisy well will know that one of the most important things in her life is Peppa Pig, the cartoon character - in Daisy...

Sir Tim Berners-Lee, Inventor of the World Wide Web When I left university and came to London with Andy my first job was a graduate ...

While having a quick tea break in the parent's kitchen today I got talking to the mum from the next door cubicle, recently arrived with ...