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
Have you ever felt like running away? Just dropping everything, grabbing your car keys/travel pass/comfy walking shoes & heading off into the sunset?
Undiagnosed Children’s Day 2020 with SWAN UK
* a very dreadful homage to all things Enid Blyton to hopefully offer some light-relief in these challenging times….
A life less ordinary…. when your children are hell-bent on confounding the medical professionals…
*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…..
Are you sitting comfortably? You won’t be for long…….
A European Family Holiday….
Growing up is hard…. for parents ….
I’ve been annoyingly cryptic (sit down in the cheap seats with your cries of ‘generally just annoying!’ 😉) over the last 6 months or so. I’ve alluded to ‘things;’ vague references to #fighting the good fight# and such but effectively been gagged from further explanation. Until now. Today after almost 6 months of hell at… Continue reading Child…..abuse… /of power?