We are Harry’s HAT

Harry’s Hydrocephalus Awareness Trust (Harry’s HAT) was founded in 2018, by Harry’s family and friends in response to the need they identified following Harry’s diagnosis with hydrocephalus (water on the brain). We became a registered charity in 2019.

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 Harry would need a permanent shunt to survive. The shunt, which drains the fluid from Harry’s brain, was inserted when he 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. His family found themselves isolated by Harry’s condition and struggled to access the support and information they needed.

In addition, Harry’s family realised that, despite the fact that hydrocephalus is the most common reason for brain surgery in children.  In the US an estimated, 1 in every 770 babies will develop hydrocephalus.  Yet, relatively little is known about the condition. Additionally, there is little investment into the management of condition on a national scale. In fact the shunt, which 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 two years, requiring further brain surgery and this was certainly the case for Harry.

In response, the family founded Harry’s HAT. We are the only UK charity to focus solely on hydrocephalus and its impact. Our overall aim is to make life better for children with Hydrocephalus, as well as for those who love and care for them.

The aim of the charity is three-fold – Awareness, Research, Support:

  • Raising awareness of paediatric hydrocephalus
  • Funding research and training for nurses and front-line workers to improve the outcome for children with the condition
  • Signposting families affected by hydrocephalus in children