RESIDENTS and organisations across Northwich are gearing up to wear white in the hope of raising vital funds tomorrow, Thursday, as part of the first ever Sturge Weber Awareness Day.
Kingsmead mum-of-four Nicola Colenso and her partner Rick Murray have organised the first national awareness day for the rare neurological condition suffered by their youngest daughter, Yasmin.
The five-year-old Hebden Green School pupil – who has a twin brother called Alfie - was born with the rare life threatening condition, leaving her with a port wine stain on her face and daily seizures.
Nicola and Rick are hoping to raise awareness of the condition – which affects one in 50,000 people – on June 27 – the same day that Yasmin will undergo life-changing surgery at Great Ormond Street Hospital in a bid to reduce seizures and improve her quality of life.
Local organisations will be holding various events on Thursday including wearing all white, holding coffee mornings and makeup sessions.
Dad Rick said: “Local organisations are doing events to raise awareness and we’re really grateful.
“A big thank you goes to Paul Dodd at Rapid 3D Solutions Ltd in Hartford who donated four large banners to help raise awareness.
“We are asking people to wear white to show their support and any money raised is going straight to Sturge Weber UK.”
A Sturge Weber Awareness Day Facebook page has been created, where Rick hopes participants will post photographs of their events.
He added: “It has gone global. We’ve got more than 1,270 followers and there are people from all over the world who will be raising awareness on June 27.
“We feel that the awareness day has gone far beyond our expectations.
“Lots of people holding events and raising awareness is brilliant because while Yasmin is going through life changing brain surgery, people will be learning about this very rare condition.”
- For more information about Sturge Weber Awareness Day or to find out how you can get involved, visit facebook.com/SturgeWeberSyndromeAwarenessDay or to donate, visit justgiving.com/sturgewebersyndrome-awareness-day
- Send your Sturge Weber Awareness Day photographs to emma.rigby@nqnw.co.uk
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