Our journey, from diagnosis to now.

You never think it will be you. But when they stare intently at the screen and the whole room goes horribly quiet, you learn very quickly that life doesn’t always go to plan.

Mummy’s Diary

The Coronavirus and me (well, Harry)

Like most of the working well population, when this horrid Coronavirus thing initially started to break the thought of two weeks of self-isolation sounded great. No juggling meetings, no school runs and I might actually get to read the book I bought back in 2005… However, it has progressed at an alarming rate. Whilst, outwardly, I … Continue reading The Coronavirus and me (well, Harry)

But he’s MY brother

When we launched Harry’s Hydrocephalus Awareness Trust – or ‘Harry’s Charity’ as Lewis, Harry’s seven-year-old ‘little, big brother’ calls it – it was all about finding a cure.  We didn’t (and still don’t) want Harry to live with this condition forever and surely, we thought, there must be a better way. Fast forward a year … Continue reading But he’s MY brother

Don’t call us Mum (or Dad)?

My friend recently sent me a brilliantly constructed article from the BMJ, written by Stephanie the ‘Mum’ of a little girl with a life-limiting illness. The article is called ‘Don’t call me Mum‘. The content really resonated and although unlike Stephanie’s daughter Daisy, Harry is considered life-threatened rather than life-limited. I read this and immediately … Continue reading Don’t call us Mum (or Dad)?


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