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.

Harry is our inspiration

Harry teaches us that each day is precious and that life doesn’t always go to plan. Harry lives life to the full and reminds us constantly that there is no rehearsal- life is for living! Harry has hydrocephalus caused by an arachnoid cyst and lives with a permanent shunt inserted in his brain.  By the time he had reached his first birthday, Harry had already endured four brain surgeries. 

We hope that this site is helpful to other families who are journeying through their child’s battle with hydrocephalus.

In April 2019 we launched Harry’s Hydrocephalus Awareness Trust. (Harry’s HAT) The aim is to address some of the issues that we have encountered since Harry was first diagnosed. We would love to hear from you if you would like to learn more.

The Blog: The views in the Blog are mine and Matt’s. The Blog is independent of Harry’s Hydrocephalus Awareness Trust. I have written the Blog as a way of helping me reflect on our personal journey and to record the highs and lows of our life with our beautiful and precious little ‘hydro-warrior’.

Donate: Should you wish to donate to Harry’s HAT charity then you can do so via the Charities Aid Foundation’s secure site. Here

 

 

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