How we help

We aim to improve the lives of children with hydrocephalus. There is currently no ‘cure’ for hydrocephalus, so whilst organisations such as ours work together long term with hope of finding a cure, our focus is on management of the condition.

We know that, for children with hydrocephalus, life can be a struggle. Although many lead very normal, happy lives, many more endure numerous brain surgeries and repeated hospital admissions.

Our work focuses on:

Raising awareness of hydrocephalus: we do this by issuing targeted information to front-line health professionals such as health visitors, GPs and support workers. All too often families tell us that they ‘knew something was very wrong’, but proving it was difficult.
Funding research and training: since founding the charity, we have been shocked by the lack of research into treatment options for the condition. Our dream would be to cure hydrocephalus but, realistically, funding research that works towards improved treatment options is the best way that we can help at present.
We also know that many front-line professionals, who work with children with hydrocephalus, struggle to access funding to support their learning and development. To us it’s clear that, if you don’t invest in those who provide the care, it’s hard to improve the outcome. We therefore provide grants and bursaries to anyone who can show how improving their learning will benefit children with hydrocephalus.

Signposting support: as a parent-led charity, we know how important it is to speak to other families. We provide peer-to-peer support and direct families affected by the condition to organisations that can offer support, advice and guidance. It often takes just one Mum, Dad, friend or Grandma to say “I know how you feel” or “been there”, to make life seem that bit clearer.

“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”

Elaine

Gran