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kerri Edwards avatar
kerri Edwards

Ken, Lee and Mikes Great Weston Ride

Fundraising for Headlines - Craniofacial Support

425 %
£4,252.00
raised of £1,000 target
by 54 supporters
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  • Event: Great Weston Ride 2016, 17 Jul 2016

Headlines - Craniofacial Support

Headlines Craniofacial Support UK provides practical support and information to people affected by craniosynostosis and other rare craniofacial conditions to help them overcome the physical, psychological and social impacts of living with these conditions.

Charity Registration No. 1058461

Story

At just 8 weeks old our son Theo was diagnosed with a rare condition called Craniosynostosis. It had been missed at birth and only picked up when he was rushed into hospital with suspected menigitis. 

Craniosynostosis is a rare skull problem which causes a baby to be born with, or develop, an abnormally shaped head. It can cause persistent headaches, learning difficulties, eye problems and other symptoms. The symptoms usually result from increased pressure within the skull. 

I am trying to raise as much awareness as i can to help other children and families. My dad and two brothers are riding the Great Weston ride in July, joined by some of his colleagues from GWR, which is a 56 mile bike ride from Bristol to Weston-Super-Mare. I will also be holding several fund raising events before then, to raise as much awareness and money as we can, for the craniosynostosis headlines charity. 

When we found out Theo had Craniosynostosis, we didnt know what to do, or who to turn to. We were passed on details of the Headlines charity, and ever since have received fantastic support, reassurance, and help, with any concerns we have. Before we found out about Headlines, we felt so alone with the situation we are in, and we are now so grateful for the support they give us as a family ♡


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