Risca dance crew raise money for Progeria sufferers
12:31pm Friday 16th August 2013 in News
A YOUNG dance crew from Risca recently visited a fundraising event for Progeria sufferers in Sussex.
Shane Parsons, 19, is the organiser of Vortex Dance Cru, which has five members ranging from 11 to 13-years-old.
The only other fundraiser they had done previously was to fund the trip to the event in the first place.
Vortex Dance has since adopted Progeria Reunion UK as its official charity after being blown away by the good work during their brief visit to a fundraising event at the Ashford International Hotel in Kent earlier this month.
The extremely rare disease affects one in eight million people and causes children to age eight times faster than normal. Progeria sufferers normally die from heart attacks or strokes at an average age of 13.
Mr Parsons said: “I think we were all a bit nervous to start with because we hadn’t experienced anything like this before. But the crew loved it and they want to do it again.
“I’m really proud of them because it’s nice to see them do something for other people.”
As of February this year, 100 children in 36 different countries have been diagnosed with Progeria.
Medical experts have located the gene that produces Progeria and drugs are being developed for the disease, although there is no known cure for it.
Kerry Okines held this year’s event, which attracts families form the UK and Europe. She hopes the event goes global once she receives enough funding.
Her daughter, Hayley, suffers from the disease and made national news last year after she wrote an autobiography, having defied the odds to reach the age of 14. She is now 15.
Ms Okines said: “Vortex Dance Cru were lovely. We thought that the children, being aged between three and 17, would find street dancing particularly cool and appealing.
“It gave everybody an opportunity to get involved and it was very entertaining. I hope Vortex Dance enjoyed the day and I am thoroughly grateful for their support.”
Vortex Dance Cru will be performing at Breakin’ Out Festival in Abergavenny on September 7.
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