Shawney’s Story
Rose has congenital hydrocephalus, caused by Aqueductal stenosis. We found out about Rose’s hydrocephalus at our 20-week scan, and she
A small, passionate, user-led charity working tirelessly to support children and families living with paediatric hydrocephalus. Our mission is to increase awareness, champion better treatment and campaign for improved detection.
Every year 1 in 770 babies will be diagnosed with hydrocephalus, yet there is little awareness of the condition and its impact. We are working to change this through targeted awareness raising.
We campaign for early diagnosis. Through our ‘Get-A-Head’ campaign, we highlight why better awareness of infant head circumference measurement as a tool for early diagnosis of hydrocephalus is vital.
Our Eye Test Awareness explains how eye tests can help aid early diagnosis.
We help children and their families who are directly affected by hydrocephalus. To do this we develop vital resources and provide connection. We deliver peer-to-peer support, so families feel less alone and can meet others from within their community who are going through the same.
We support research and fund training. This improves understanding of the condition and its management amongst front-line health care professionals, which improves patient care.
Rose has congenital hydrocephalus, caused by Aqueductal stenosis. We found out about Rose’s hydrocephalus at our 20-week scan, and she
I was diagnosed with congenital hydrocephalus when my mum was 37 weeks pregnant. When the hydrocephalus was discovered, I was
In December 2023, our son Harley was born. It was the most wonderful birth and the perfect present, bringing home
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