Archive of ‘Campaigns’ category

saysomething

Say something

My uncle gave me the best advice of my life one night as we were drinking pints of beer in my dad’s old pub. It was not long after he died and my siblings and I had a phase where we shunned the bright lights of the city centre bars for this old man’s pub […] Read more…

support

Pin a dirty nappy on the door

First, I asked for advice from a friend in a similar situation: Well whatever you do DON’T tidy up. Or wash your hair. Or the kids. In fact, get the bin and tip it out all over the kitchen. Leave a dirty nappy on the table. Even better pin a dirty nappy to the door haha. […] Read more…

walking2

Deep, deep breaths

This is the first in a series of blog posts to mark the fourth Undiagnosed Children’s Awareness Day, which takes place on  Friday 29th April.  Each one will highlight different aspects of raising a child with complex medical needs of unknown cause – the good, the bad and the blooming lovely. Dear me from four years ago I stumbled across the photo below from Christmas […] Read more…

Gabe,undiagnosed

Let’s get this party started

Today I was invited by SWAN UK to speak at their first All Party Parliamentary Group on Rare, Genetic and Undiagnosed Conditions in the Houses of Parliament.  I was asked to talk about my family’s experience of having a child with an undiagnosed genetic condition. All Party Parliamentary Groups (APPGs) are informal, cross-party, interest groups […] Read more…

bobby2

There was a boy

There was a boy. His name was Bobby. One of four brothers, he had a wide cheeky smile and was the apple of his mum and dad’s eye. A football-loving, funny, fearless little boy. Who will remain forever 6 years old. Last October, on the last Friday of the half term, he took one step away from the safety of his mother’s hand and into the path […] Read more…

cup

Women on the edge

In Liverpool where I grew up the phrase “I am on the edge” is much bandied about. It is a brilliant statement that has evolved to comedy status over the years. The chippy was shut and I was starving. Then he couldn’t decide on Maccies or Chinese. I was on the bloody edge. There were […] Read more…

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