How does it feel to be the parent of a child without a diagnosis?
The unchartered waters of life without a diagnosis….
The Self-isolation Society…..*
Undiagnosed Children’s Day 2020 with SWAN UK
6 Go Crazy On A Socially Distanced Adventure…*
* a very dreadful homage to all things Enid Blyton to hopefully offer some light-relief in these challenging times….
The Rare Conundrum…..
A life less ordinary…. when your children are hell-bent on confounding the medical professionals…
Planes (no trains) & automobiles…..*
A European Family Holiday….
Happy Birthday to You – My Swan Song
It is fittingly ironic that yesterday, we received further communication from genetics regarding the 100,000 genome project (you can learn more about this: https://www.genomicsengland.co.uk/about-genomics-england/the-100000-genomes-project/) on the eve of Undiagnosed Children’s Day. Whilst the letter outlined what we already broadly knew (nothing has so far been found to explain the complexities related to Minx and potentially… Continue reading Happy Birthday to You – My Swan Song
A line in the sand….
Have you ever felt like running away? Just dropping everything, grabbing your car keys/travel pass/comfy walking shoes & heading off into the sunset?
There’s a hole in my??….tummy,….???Dear Mummy…..
*Cute dog photobombing buckets is not the focus of this piece but who doesn’t love a dog right? It has been feeding tube awareness week this week and as it draws to a close, it seems fitting to share a post I started back in November last year but never got around to finishing!! Day… Continue reading There’s a hole in my??….tummy,….???Dear Mummy…..
There’s a worm at the bottom of???…:🐛🌹
Are you sitting comfortably? You won’t be for long…….