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Braunton couple host masked ball to raise awareness of rare diseases

PUBLISHED: 09:42 15 February 2017 | UPDATED: 17:22 15 February 2017

Olly and Lucy Seymour are holding the masked ball at SQ in Braunton. Picture: Sarah Howells

Olly and Lucy Seymour are holding the masked ball at SQ in Braunton. Picture: Sarah Howells

Archant

Lucy and Olly Seymour are raising money for two charities after Lucy was struck down by a rare illness which left her unable to walk or talk.

A Braunton mum-of-three is raising awareness of rare diseases with a charity masked ball after being struck down by a mystery illness which left her unable to walk or talk.

Lucy Seymour, 30, was a normal, healthy mother and businesswoman when, in July 2015, she began to feel unwell with flu-like symptoms.

A couple of days later she was rushed to hospital after her mum found her slumped on the bathroom floor, unable to move her legs and with slurred speech.

Lucy’s condition quickly deteriorated – she had leg spasms, severe light sensitivity, and she couldn’t co-ordinate her movements or even touch her nose.

“Overnight I went from being a fully functional, 100 per cent healthy mother-of-two, to not even being able to walk, talk, bathe or feed myself,” said Lucy.

“Despite spending countless weeks in three different hospitals, seeing both private and NHS doctors, and having months of speech, occupational and physiotherapy, I still have not been given a definitive diagnosis.”

Due to the rarity of the illness, Lucy has been diagnosed with the generic term ‘encephalopathy’, which broadly encompasses neurological problems.

Lucy is on the road to recovery – physically she is back to normal and she has recovered a lot of her speech – but her struggle is not over.

In the last couple of months, two of her children, Harry, three, and Olivia, two, have had to be put into medically-induced comas due to the same undiagnosed illness.

Lucy added: “Words will never describe the terror of seeing your energetic three-year-old and 20-month-old lying there sedated, and not able to breathe on their own.”

Lucy and her husband Olly, 29, who have since had third son Jack, three months, are now hosting a masked ball at their business, SQ Bar and Restaurant in Braunton.

All money raised will be split between Rare Disease UK and Over and Above for the Caroline Thorpe ward at North Devon District Hospital.

The ball sold out within hours but the couple are still interested in hearing from businesses who would like to donate ‘lots’ to their charity auction.

Lots include a corporate day at Wembley to watch England play football, signed football shirts, beauty treatments, season passes to Putsborough beach and more.

“So far Lucy has raised about £2,000 and I am hopeful she will double that by the time the night is over,” said Olly.

“I’m immensely proud of her and we want to say a huge thank you to everyone who has helped us or donated to the ball, as well as our families for their support.”

Tickets are sold out, but you can donate to Lucy and Olly’s chosen charities at justgiving.com/fundraising/Jane-Squire1 (Rare Diseases UK) or justgiving.com/fundraising/SQCharitynight (Over and Above) or attend on the night for drinks and dancing.

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