This Sunday I am running the London Marathon again.  I ran it last year thanks to a golden bond place from ShootingStar-Chase, Daisy's H...

It's always great when a plan comes together and the beginning of this year has seen all the frantic and stressful attempts at trying to...

28 February 2014 marks the seventh international Rare Disease Day coordinated by EURORDIS . On and around this day hundreds of patient orga...

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

OK first things first - what in heaven's name is Team Honk?  Team Honk is the name of a social media phenomenon, driven by bloggers to r...

I really, really did not imagine I would ever write a post with the title "when your child's playstation habit makes you burst with...

This is the toughest time of the year for us Special Needs Parents, New Year brings with it not a sense of expectation but almost a sense of...

Merry Christmas everyone.  We have had a hectic few days celebrating Daisy's 9th (yes, can you believe it 9 years old!) birthday and pre...