How does it feel to be the parent of a child without a diagnosis?
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?
Undiagnosed Children’s Day 2020 with SWAN UK
A life less ordinary…. when your children are hell-bent on confounding the medical professionals…
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)
Living the dream…
Do you see what I see?….Hmnnn what would that be?
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 💩???