The unchartered waters of life without a diagnosis….
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?
* a very dreadful homage to all things Enid Blyton to hopefully offer some light-relief in these challenging times….
Are you sitting comfortably? You won’t be for long…….
A European Family Holiday….
verb [ I ] US
to deal with problems or difficulties, esp. with a degree of success:
Inside homes, many residents coped with broken glass and collapsed walls and chimneys.
Victims cope with feelings of anxiety, pain, anger, and fear.
(Definition of “cope” from the Cambridge Academic Content Dictionary © Cambridge University Press)
Today has been a bit 💩 I’m not going to lie…… We had to be Chez Hotel NHS Harrogate bright and early this morning for a date with radiology following G-Man’s “discussion” with a fire extinguisher on the last day of term. For the avoidance of doubt the fire extinguisher won & once again G… Continue reading Comfort food or food to comfort?
Who cares for the carers? There are many days where I feel like waving the white flag of surrender. I give up. Stick a fork in me, I’m done. Substitute your own personal favourite motto for when the 💩💩 just keeps on coming and you really don’t want to face it anymore. As a rule, I am… Continue reading Relentlessly Relentless….
This year 28th February 2018 is the worldwide celebration of Rare Disease Day. The very first ever Rare Disease Day was held in 2008 – a leap year so the perfect occasion for the initial 18 countries that signed up to celebrate. Every year since, countries across the world have united to raise awareness of… Continue reading Same but different….rare as Unicorn 💩???