Southport Town Hall and The Atkinson will turn purple this Friday (22nd September 2023) in honour of an inspirational Southport boy born with a rare skull condition.
The event will take place at 6pm, with everyone welcome, to recognise Craniosynostosis Awareness Month.
The event is taking place to honour the bravery of 14-year-old Stanley High School pupil Eden Barbé, from Southport, who underwent gruesome surgery as a baby after being born with Craniosynostosis.
The super-talented youngster, who wants to become a professional ballroom and latin dancer, will be forever grateful to medical staff at Alder Hey Children’s Hospital in Liverpool for saving his life.
The request to turn two of the grandest buildings on Lord Street purple was made by Eden’s loving younger sister, Ebony.
Both children attend Stanley High School in Marshside in Southport.
Craniosynostosis is a condition where one or more of the gaps in an infant’s skull fuses prematurely, which can affect cranial growth, skull development and head shape.
It affects approximately 1 in 2,500 births, and treatment involves surgical correction.
Raising awareness for this condition is important as there are a number of treatment options available to parents that can be offered depending on age of the child at diagnosis. Early recognition allows empowerment of parental choice.
Eden’s Mum, Jenny Barbé, said: “We have seen previous towns light up purple for Craniosynostosis awareness and Ebony asked if we could light up our town.
“She has always supported Eden and Craniosynostosis.
Ebony Barbé (right)
“As a family we raised over £2,000 for Alder Hey for Eden’s 10-year Cranioversary.
“Ebony is having Southport Town Hall and The Atkinson lit up purple this Friday to raise awareness for Craniosynostosis, for Eden.
“Eden is 14 now. He is doing great, he may require further surgery in the future to fill a huge gap in his skull that never knitted together fully after his surgery.
“He is still very focused on his dancing – he wants to become a professional ballroom and Latin dancer.
On 7th June 2010, Eden Barbé underwent nine hours of gruelling surgery to reconstruct his skull to prevent brain damage. He also has a type of Autism, Asperger’s Syndrome, which may have been a result of his condition due to the pressure on his brain.
Despite his condition, Eden, who previously attended Churchtown Primary School in Southport, really comes alive when dancing.
His Mum Jenny said: “Eden enjoys life, and despite his disabilities he thrives at lots of things, dance being his main activity. He dances ballroom, Latin and street dance and competes nationally and internationally. We are very proud of him.”
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