Harry's Hydrocephalus Awareness Trust

Awareness Research Support

Registered Charity Number: 1183086
Guildford, Surrey

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About Harry's Hydrocephalus Awareness Trust (Harry's HAT)


It was founded in 2019 by Harry's family and friends in response to the need they identified following Harry's diagnosis with Hydrocephalus (water on the brain).

Harry was diagnosed with an Arachnoid Cyst when his mother, Caroline, was 36 weeks pregnant.  Soon after Harry was born it was confirmed that the Cyst had caused Hydrocephalus and that to survive Harry would need a permanent shunt.  The shunt, which drains the fluid from his brain, was inserted when Harry was just eight weeks old. 

By the time Harry had reached his first birthday he had already endured four brain surgeries.  He spent lots of time in hospital and had frequent blue light trips into A&E.

The family found themselves isolated by Harry's condition and struggled to access the support and information they needed.  In addition, they realised that despite the fact that Hydrocephalus is the most common reason for brain surgery in children and affects 1 in every 1000 babies born in the UK today, relatively little is known about the condition and there is little investment into the management of the condition on a national scale. In fact the shunt, which is the device that keeps Harry alive, was invented by Roald Dahl in 1962 after his own child was injured in a serious accident.  The technology surrounding this hasn't really moved on since then.  50% of shunts block within the first year, requiring further brain surgery and this was certainly the case for Harry. 

In response, the family founded Harry's HAT. It is the only UK charity to focus solely on Hydrocephalus and its impact. Its overall aim is to make life better for children with hydrocephalus and for those who love and care for them. It does this through: Awareness, Research and Support. 

We run a Blog which gets lots of interest.  If you would like to start following then please visit:


Harry's big peddle


The charity has three key aims- Awareness, Research, Support. 

1. Raising awareness of paediatric Hydrocephalus

2. Funding research and training for nurses and front-line workers to improve the outcome for                   children with the condition

3. Supporting families affected by Hydrocephalus in children. 


Contact Us

Harry's Hydrocephalus Awareness Trust 96 Albert Road

GU19 5QJ

Phone: 01276 453886



Harry's Hydrocephalus Awareness Trust News

Harry's Big Peddle

Date posted: 26 Apr 2020

Harry is taking part in the 2.6 challenge- will you join him. … Read More»

Advice for carers of children with Hydrocephalus during COVID-19

Date posted: 09 Apr 2020

In this time of crisis, many specalist neuro-nurses may have been redeployed, sadly be unwell or be self-isolating. Here is a list of information to take with you to hosptial should you need to take your in child during COVID-19. Please remember a shunt blockage is STILL a life-threatening emergency and STILL needs urgent attention. Please STILL take your child to A&E if they are showing symptoms of a shunt blockage. … Read More»

The abilites in me, Hydrocephalus

Date posted: 12 Mar 2020

Harry was sent a signed book, by the not-for-profit author Gemma Keir… Read More»

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