Registered Charity 1183086
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. Here in their words, Caz and Matt tell us why.
Harry was diagnosed with an arachnoid cyst when Caz, 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. We found ourselves isolated by Harry’s condition and struggled to access the support and information we felt was needed specifically for paediatric hydrocephalus. We also found that our other children were deeply affected by the uncertainty of the condition- often someone else would be picking them up from school because Harry had become unwell and this had a negative impact on their mental health and wellbeing.
We realised that, despite the fact that hydrocephalus is the most common reason for brain surgery in children and in the US an estimated, 1 in every 770 babies will develop hydrocephalus, relatively little is known. Additionally, there seemed to be little investment into the management of condition on a national scale. In fact the shunt, the device on which Harry relies, 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, whose blocked within the first three months. Furthermore, we discovered that it was difficult for frontline health professionals who cared for Harry to access funding for networking and skills sharing- and as a parents we were of course keen to address this- after all these are there people who keep Harry alive! We knew we wanted to make a change and try to make things a little better for all everyone affected by the condition and we wanted to do this in our son’s name.
In response, we founded Harry’s HAT. We are the only UK charity to focus solely on paediatric 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 charity has grown holistically based on need and input from other families who are also on the same journey.
The aim of the charity was initially three-fold – Awareness, Research, Support:
