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).
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 and affects 1 in every 1000 babies born in the UK today, 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 in the 1950s and 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. 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, as well as for those who love and care for them; and, ultimately find a cure.
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
Funds will be used towards the completion of their app and the ‘I wish I had known that’ book. Both projects aim to promote independence for families and children affected by hydrocephalus and to foster access to support to help improve the experience of both the child and their family.
The team has excellent links with most of the UK’s neurosurgical teams, and funds training (for front-line medical, health and social care workers) to further develop their understanding of the condition.
“Wow and thank you for shortlisting Harry’s HAT! Being a small charity and seeing a need that is so much bigger than we are, is at times overwhelming but also motivating. Knowing that there are people out there who share our vision and are willing to support our work means everything and helps to lift us up when the challenge seems huge!”
Since Caroline and Matt set up this amazing charity in 2018, it has provided support to other families with children with hydrocephalus and NHS staff as well. With a good team of trustees (all volunteers), they have harnessed their skills and made excellent progress since registering as a charity in 2019.
The charity has big ambitions but at the moment is just getting started and funding will go towards its development. Whether our funding is spent on the app, the book or the funding for medical professionals to receive training in the condition – it will all improve the standard of care and support for children with hydrocephalus and their families.
Latest Project Updates
Amplify Charity Film Released
With huge potential for growth, Harry's HAT needed help getting off the ground with promoting awareness. We helped by providing funding for a film to highlight how they support children with Hydrocephalus.
Harry's HAT two years on
We recently caught up with Caroline Cotes who has now become the CEO of Harry’s HAT to find out how the charity has been doing since receiving their funding. Here is what she had to say:
"We were delighted one of the first recipient charities of the Grants for Good programme. We applied because the programme gave us the opportunity to secure vital core funding and a platform to share our work and raise awareness of paediatric hydrocephalus- a little known, yet life-threatening condition which affects an average, of 1 in every 770 babies born in the UK today. We wanted to be associated with a funder who genuinely cares about the causes it supports and took the time to get to know them, so the programme was a perfect match! Being chosen for support not only gave us vital funding which helped us launch our first book ‘Hydrocephalus What I wish I’d known’. As a result of the support our book is now given for free to the parents and carers of newly diagnosed children across the UK. So far, 475 families have benefitted directly as well as 20 neurosurgery units, 34 health visiting teams and numerous front-line workers who now share it as a resource. The books help reduce isolation and provide frightened families with comfort, information and a much-needed source of support in the early weeks and months after a child’s devastating diagnosis. In addition to the funding however, the support helped us grow in confidence. As a newly formed charity, it was so encouraging to know that people believed in our cause and wanted to help. We were thrilled to win the vote and proudly displayed this on our all platforms. It also gave our dedicated team who all give their time to charity for free, a much-needed boost.
From my personal perspective launching the charity meant sharing our own very persona and difficult story, after-all Harry is my son. Knowing that people supported us and could see the value in our work gave me so much confidence. In the short time since gaining the award we have supported over 350 families, secured grants to enable us to employ skilled staff to deliver support, funded front-line workers to learn more about the condition and so improve patient care, been shortlisted for prestigious national awards and media coverage, and trebled our income. We know that our work to improve the lives of children and their families affected by hydrocephalus is making a difference and that makes all the hard work worthwhile"
After becoming one of the top five finalists in the latest Grants for Good Round, £3,500 was granted.