Undiagnosed Children’s Day 2020…

Today is Undiagnosed Children’s Day. Did you know that children who have no formal diagnosis are called SWANS? Syndromes Without A Name. Most of the time I’m not troubled by the fact that Edith is officially undiagnosed. Since birth, Edith has only ever shown progression and I think this helps me a lot. However, it’s [...]

Surviving the S**t Storm…

A really honest and raw account of going through cancer whilst supporting a disabled child. It’s a long one so maybe put the kettle on first. It may not be the worst experience but it’s my experience.
If you need help;
https://www.mind.org.uk/
https://www.jostrust.org.uk/
https://contact.org.uk/

A bit like a unicorn or a mermaid…

Today is Undiagnosed Children’s day💕 To date we still have no definitive diagnosis for our Little E. At times, this is incredibly difficult. I’m not saying having a diagnosis would be any easier but it may give us some answers; some connections. What we know is that Edith is Hypotonic (floppy), she has developmental delay [...]