via: Good News Shared
“The more people that know what Hydrocephalus is, and the earlier the diagnosis, the earlier the child is diagnosed, the more chance they’ve got of having a really good outcome.” – Caroline, Harry’s mother.
Harry’s Hydrocephalus Awareness Trust was founded in 2018 by Harry’s family and friends in response to the need they identified following his diagnosis with hydrocephalus, often called “water on the brain.” The charity aims to raise awareness, fund research and help signpost families affected by hydrocephalus in children.
As the only UK charity to focus solely on hydrocephalus and its impact, Harry’s HAT aims to make life better for children with hydrocephalus, as well as for those who love and care for them.
Originally the plan was to fund research and help neuro nurses who look after children with the condition to access more training. However, the charity grew quite quickly as more families across the UK got in touch and with such support, Harry’s HAT became a registered charity in 2019.
More recently, the charity has published its first book, ‘Hydrocephalus: What I wish I’d known’ aimed at families affected by hydrocephalus, especially for those at the start of their journey. The 42-page book is packed with parent experience stories including first-person hints, tips and useful resources to help navigate the new ‘normal.’
In terms of raising awareness and support, Harry’s HAT has initiated a series of parent groups associated with the different neurosurgical hospitals so that parents can meet other mums or dads who are going through the same thing and build face-to-face contacts.
In June this year, (originally March, but postponed due to COVID), Michael Gove MP will host a Parliamentary Reception at the House of Commons for Harry’s HAT aimed to raise awareness of the importance of hydrocephalus and the impact it has on the individual and on the NHS. To boost awareness, a national campaign on the vital need for head circumference measurement is an important next step in raising awareness of the cause.
To find out more about Harry’s HAT and learn about hydrocephalus, click here.