Story by Wendy Edwards and Charles Edwards

Our journey with Headlines started 13 years ago when our second son Ben was born with sagittal craniosynostosis.  He had as the doctors put it "an unusual shaped head" as the plates of his skull had fused together during pregnancy.  Craniosynostosis affects 1 in 2000 births (350 babies a year) and is caused by single or multiple fusion of the boney plates in the skull.  The condition can cause disfigurement not only to the skull but to the facial bones, eye sockets and the jawbone leading to problems with hearing, speech, eyesight and development.  Ben's condition only affected the shape of his skull and at the age of 5 months he had cranial surgery at GOSH in London to correct his head shape.  At that time we thought that was the end of our cranio journey. 

However, when he was 4 years old Ben developed raised intracranial pressure and without surgery could have lost his eyesight and could have developed brain related issues.  It was a scary time in our lives but we were lucky to have amazing surgeons who undertook "posterior vault reconstruction surgery" which involved removing the back of his skull, cutting it into pieces, and creating a new skull, like a jigsaw puzzle, which would allow more space for his brain to grow.  After a 7 hour operation at CHOP in Philadelphia, we were told everything was going to be alright by the craniofacial team and 9 years on Ben has not looked back! 

Headlines has always been there for us and now as the Chair (Wendy) and Treasurer (Charles) of this charity we are wanting to push ourselves to the limit and be brave just like Ben and others have been, and raise much needed funds.

By jumping out of a plane at 10,000 feet  we will also launch Cranio Awareness Month which aptly starts on 1st September 2019 - the day of the big SkyDive.

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