Spotlight: Registered Charity No. 1183086 – HARRY'S HYDROCEPHALUS AWARENESS TRUST (Harry’s HAT)

Spotlight: Registered Charity No. 1183086 – HARRY'S HYDROCEPHALUS AWARENESS TRUST (Harry’s HAT)

19th Mon, Oct, 2020

Today, we catch up with Caroline, co-founder of Harry’s HAT, to find out a little more about this charity, why it was set up and what the charity’s plans are.

Caroline currently works as a Fundraising Manager for a sexual abuse charity but has previously worked as a fundraiser for a number of other community-based welfare charities, securing significant amounts from grants, trusts, corporates and the community for causes which directly benefit those in need. Caroline’s expertise has been formally recognised and celebrated, most notably when named as one of Fundraising Magazine’s ‘Top 25 under 35’ and when awarded the Institute of Fundraising’s ‘Gill Astarita Fundraiser of the Year Award’.  

For twenty years, Caroline was always the ‘professional’ fundraiser - raising money with passion and real purpose, but she was never directly affected by the causes she was representing.  While this never dimmed her professional determination or commitment, Caroline did feel some personal gratitude that she was perhaps able to ‘switch off’ at the end of each day.

Then, along came Harry...

At 36 weeks pregnant, Carloine and her husband, Matt were told that their soon to be born baby was missing a section of his brain.  The full diagnosis was soon after confirmed as an arachnoid cyst that would cause hydrocephalus.  Caroline and Matt felt that their world stopped turning...but this was only temporary because their son, Harry, was born less than 2 weeks later and by his first birthday, Harry had undergone 4 brain surgeries, 5 MRI scans, 6 General Anaesthetics, 7 in-patient admissions, 23 emergency trips to A&E and 32 planned hospital appointments.

Caroline and Matt had landed in the dizzyingly complex and terrifying world of medical procedures, assessments and prognoses.  Not uncommonly, they often felt alone and isolated. 

Founding the charity

Yet, even in the midst of that mind swirl, and perhaps unknowingly at first, Caroline and Matt began their journey to founding the charity that is Harry’s HAT.  They quickly discovered that Hydrocephalus is a complicated and life-threatening condition affecting 1 in every 1000 children in the UK, and is currently the most common reason for brain surgery in children.

They also learned that research into shunt technology (the device which keeps Harry and thousands of children like him alive) hadn’t progressed much since Roald Dahl was involved in its development in the 1960s.

Furthermore, they were told there was a 50% chance that this life-saving device could fail within two-years of insertion.  How true that turned out to be for them!

There is no cure for hydrocephalus, only risky treatment.  They discovered that the nurses who treated Harry often had to fund their own training. 

Given her background and relative success in fundraising, Caroline set about roping in everyone they knew and founded Harry’s Hydrocephalus Awareness Trust - Harry’s HAT. 

In April 2019 they successfully registered the charity and, since then, their lives have turned into a fundraising whirlwind.

What does the charity do?

The charity’s stated aims are:

  • To work with communities to raise awareness of paediatric hydrocephalus
  • To provide grants so that people working with children affected by hydrocephalus can improve their understanding of the condition
  • To connect families affected by hydrocephalus
  • To fund research to improve life-chances of children with the condition. to relieve sickness and to assist in the treatment of care

In short, the charity’s mission is to ‘make life better for children with hydrocephalus’ through awareness, research and support.

The money the charity raises is helping to change things for children like Harry and to give dedicated front-line and NHS professionals access to funds so that they are better able to enhance their knowledge and expertise. 

The team

Caroline stated that ‘we have the most amazing team of dedicated trustees; people who not only look after the charity, but also ensure that my wellbeing as the figurehead is safeguarded’.

The charity is governed by a board of 7 trustees, all of whom are employed elsewhere and bring a wealth of relevant knowledge, experience and expertise, for example from the fields of law, finance, community engagement and operational management.

There are no paid staff but there are plenty of willing, regular volunteers, including Caroline and Matt’s 3 other children!

Achievements

Harry’s HAT is growing fast!!

Despite its status as a comparatively new charity, Harry’s HAT has already funded healthcare professionals to attend events in the UK and abroad, including:

  • European Society for Paediatric Neurosurgery (ESPN) - 2 nurses were funded to attend an event in Athens, to improve their skills and knowledge in caring for children undergoing neurosurgery
  • British Paediatric Neurological Group (BPNG) - 3 nurses were funded to attend an event in Cardiff in 2019
  • Neuroscience module at South Bank University – 1 nurse was funded to complete a module on acute neuroscience care for children and young people

Harry’s HAT has also set up a fantastic ‘Guest Blog’ page on its website where other ‘Hydro’ families, and others who battle to support their children, can share their
experiences of their personal journeys.  This has proved to be an invaluable resource for others facing life with hydrocephalus, yielding touching testimonials such as: “Knowing they have someone who understands exactly how it feels, to have a child with Hydrocephalus gives me as a mum and gran peace that they aren't alone”.

As if that isn’t enough for such a young charity, they have also managed to secure   a Parliamentary Reception at the House of Commons in March 2021, hosted by Michael Gove MP.  The aim of the event is to officially launch the work of the charity and to highlight why the UK needs to increase spending on hydrocephalus research.

Hopes for the future

Caroline is wholeheartedly committed to using her professional experience and sharing her family’s story to help change the lives of children like her precious son, Harry.  The work of the charity is fully geared to giving those children a future, free from hundreds of painful procedures, fear and uncertainty.  With your support, and just a little luck, hopefully they can get there. 

How to help

Donate securely here at their CAF page

Fundraise: Anything that raises money for the charity is fundraising. The main way to do this is by participating in a sponsored event or challenge, or by holding an event of your own. You may want to take on a local running or cycling challenge, host a charity bake off or simply choose to raise awareness about Harry’s HAT.

The charity has branded collection boxes and collection pots. If your organisation could display one, then please do get in touch:

Facebook:     www.facebook.com/harryshattrust

Instagram:     www.instragram.com/harrys_hat_charity

Twitter:           www.harrysHAT5

Best wishes to Caroline and all the team at Harry’s HAT!! 

Check out their listing and the details of thousands of small charities hard at work in our communities across England and Wales on the Social Responsibility website www.social-responsibility.co.uk