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 08 April 2008   Latest News
       

 
Musical fund-raiser for ‘butterfly girl’ Adana

THE PLIGHT of a nine-year-old Montrose girl born with an incurable condition that makes her skin peel has prompted a massive fund-raising effort at Brechin Castle.

Led by the principal of Montrose’s Gordon School of Dancing, charity show Spirit Of The Celts will take place next month on an outdoor stage using the castle as a backdrop, thanks to the support of Lord and Lady Dalhousie.

The show will be a fusion of Scottish traditional dance with Celtic jigs and rock music, and promises fantastic sound and lighting.

Angus has been inspired by the bravery of Adana Forsyth, born with the most severe form of the skin condition epidermolysis bullosa, which is incurable.

She is one of 350 sufferers in Scotland of the extremely painful genetic disorder which causes her skin and internal linings to blister, bleed and peel at the slightest touch.

They are known as the butterfly babies because their skin, like the membrane of the insect’s wing, is so fragile.

Dundee University scientists are working towards a cure and have identified 14 of the genes responsible for the condition.

Dance school principal Robina Addison said, “EB can be cured in mice now and there is confidence that clinical trials on humans are imminent. We want Adana to be a priority.

“Her plight has touched people’s hearts the length and breadth of the country.

“This brave wee soul has been kept alive by modern science but it has committed her to a lifetime of pain and her family to extreme anguish.

“It is ironic that the new treatments that she may need to help to develop will benefit others but perhaps will be too late for her.

“It would break your heart to see the pain she endures.”

Last year, with her school of dancers, Mrs Addison raised just under £20,000 for Adana.

The Ceilidh Peppers, a nine-piece ceilidh rock band from Kintore, will perform at Brechin Castle alongside the choreographed dancers.

A large number of volunteers are committing their time to the event, which takes place on May 18 and will be televised.

But the costs for stage and sound hire and regulation support facilities are expected to be more than £13,000 and sponsors are being sought.

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