Every year around 1 in every 770 babies will develop the hydrocephalus. Hydrocephalus (which is often referred to as water on the brain) is a life-threatening condition and there is no cure, but there is treatment.  Most children with the condition are kept alive by the insertion of a device called a shunt

Children with hydrocephalus, need to take special care not to become dehydrated. Something which is pretty tricky to do in the heat and when at school out with friends or taking part in sports. 

Following a very hot summer and reports of children with hydrocephalus struggling in the heat we asked families about their experiences and found that many were finding it really hard, not only to encourage their child with hydrocephalus to drink, but also to explain to school and the wider community why it is important for a child with hydrocephalus to remain hydrated.

We then posted on our social media to ask if stickers and bottles reminding a child with hydrocephalus to drink their water would help. We were staggered by the responses. Everyone who commented on our posts said that these stickers would be incredibly helpful, and many asked how long it would take until they could order their own.  Many also felt that there was a lack of awareness of the importance of this at their child's school and as consequence many families are feeling very anxious. As so many comments have stressed the how important the issue is and also the anxiety that it causes, we know we need to act now!

Our chair of Trustees, who is a marketing superstar, has come up with a lovely design which we now want to make into waterproof stickers. We also want to print the design on clear water bottles so children can use these too.

Plus, many parents have suggested designing rewards stickers, which can be given to children when they remember to drink water. We would also like to produce a simple factsheet which explains why keeping hydrated for children who live with the condition is important.  

So far, we have been able to secure a grant of £500 and two print companies are kindly printing the stickers.

We are now seeking support to print and purchase the remaining items we need to make this project a success.  

Once the items are ready, we will run a series of free workshops aimed at schools and community groups.  The workshops will explain more about the condition and reiterate the importance of good hydration for children with the condition. The workshops will be free. The aim is to make sure that there is good awareness of hydrocephalus and the needs of children who battle with it on a daily basis. The hope is that children with the condition feel better understood and that their families feel more confident that their needs are being safely met, which helps promote independence. 

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