Purple reigns as Black Isle community rallies round lass with rare condition
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A BLACK Isle community has rallied round a little girl whose rare condition requires round-the-clock monitoring.
Avoch Primary School pupil Meme Simon (6) suffers from Dravet syndrome, a rare, catastrophic, lifelong form of epilepsy which is characterised by severe and prolonged seizures and a range of complications.
Her mum Natalie, a chef, enlisted the help of Fortrose Cafe to throw a funding and awareness-raiser to coincide with Epilepsy Awareness Day and provide a boost to the Daisy Garland Trust and Epilepsy Awareness UK.
Mrs Simon, who dyed her hair purple to fit in with the colour scheme of a musical bingo night and a raffle with prizes, was touched by the response to the effort.
More than £1000 raised on the night was boosted to £1590 thanks to an anonymous donation, while sponsors chipped in another £1000 for her hair dye effort.
Mrs Simon, who is from Beauly, said she chose the Daisy Garland Foundation as it had supplied a specialised monitor for her daughter. She said: “It’s really a lifesaver and the monitor alone costs £1000, so you can imagine the kind of fundraising that the charity has to do to supply these to children around the country.” She also paid tribute to cafe owner Janet Gray and Joni Phippin for helping pull the event together.
Ms Gray said: “The main thing was to raise money and awareness of epilepsy and if the event alerted people to even one bit of information about the condition, it was worth it.”
She believes such events also help tackle the wider issue of loneliness and isolation in the community and plans to host more in the future.
The Daisy Garland Trust helps children who have treatment-resistant epilepsy. Major landmarks were lit up with purple lights last Tuesday to mark Epilepsy Awareness Day.
