Two of Southport’s landmark buildings are shining purple tonight (Friday 22nd September 2023), inspired by the bravery of a local schoolboy.
The Atkinson and Southport Town Hall have both been lit up to highlight Craniosynostosis Awareness Month.
The event was held this evening 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.
Eden was joined by members of his family including his Mum, Jenny, and sister, Ebony, who wrote to Southport MP Damien Moore to ask if he would support their awareness raising.
Damien Moore MP said: “I am delighted to be here to support this amazing campaign by Eden and his family.
“Turning these buildings purple to highlight Craniosynostosis Awareness Month is a fabulous thing to do to draw attention to the condition and the issues that families face.
“I wish Eden and his family all the best with their ongoing campaign and would love to see people supporting them in their endeavours.”
Other Craniosynostosis families from the region also travelled to Southport to support Eden and Ebony, both of whom 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.
The Atkinson and Southport Town Hall were lit up purple to highlight Craniosynostosis Awareness Month, inspired by Southport schoolboy Eden Barbé. Eden was joined at the event by sister Ebony, Mum Jenny, Southport MP Damien Moore and other supporters. Photo by Andrew Brown Stand Up For Southport
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.
“As a family we raised over £2,000 for Alder Hey for Eden’s 10-year Cranioversary.
“Ebony was really pleased to see Southport Town Hall and The Atkinson lit up purple on Friday to raise awareness for Craniosynostosis, for Eden.
The Atkinson and Southport Town Hall were lit up purple to highlight Craniosynostosis Awareness Month, inspired by Southport schoolboy Eden Barbé. Eden was joined at the event by sister Ebony, Mum Jenny, Southport MP Damien Moore and other supporters. Photo by Andrew Brown Stand Up For Southport
“She wrote to Southport MP Damien Moore to invite him to the event, and we were really pleased to see he was able to join us.
“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. “
The Atkinson and Southport Town Hall were lit up purple to highlight Craniosynostosis Awareness Month, inspired by Southport schoolboy Eden Barbé. Eden was joined at the event by sister Ebony, Mum Jenny, Southport MP Damien Moore and other supporters. Photo by Andrew Brown Stand Up For Southport
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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