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Mum’s climb to spread word of son’s rare condition

By Burton Mail  |  Posted: March 19, 2014

Caroline Squires and son Charlie

Caroline Squires and son Charlie

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A MOTHER is preparing to scale Britain’s highest mountain to raise awareness of her son’s rare life-limiting condition.

Caroline Squires, from Brizlincote Valley, is to tackle Ben Nevis in support of Dravet UK, and will be joined by other mothers who have to deal with the condition’s devastating effects.

Miss Squires’ world came crashing down six months ago when her son Charlie had been diagnosed with Dravet syndrome.

The condition is a severe form of epilepsy which causes regular seizures, affecting around one in 38,000 babies, with 18-month-old Charlie believed to be the only sufferer in Staffordshire.

Miss Squires said: “The first seizure happened when he was five months old, it lasted 35 minutes.

“He was rushed to A&E and treated for meningitis because they didn’t know what was wrong, nobody knew what it was.”

As the seizures continued, it eventually confirmed that Charlie had Dravet syndrome and Miss Squires, of Dalton Avenue, admits she doesn’t know what lies ahead.

She said: “It was devastating. I haven’t really got used to it. Physically he looks okay, it is hard to tell there is anything wrong.

“We don’t know what the future holds, we’ll just have to wait and see. We have got that worry. That’s why we’re doing the challenge.”

The 36-year-old will soon begin preparing for the challenge, set to take place in September, as she readily admits to not being the most active person.

She said: “I’ve never done anything like this before, I can’t even walk to the shops! We’re going to go to Snowdonia to get us ready.”

Despite the difficulty of the challenge, making more people aware of the condition and raising funds for its main charity will drive her on.

She added: “There was a child with Dravet syndrome who died from a seizure on Christmas Day and it makes you think ‘wow’. I just want to highlight the condition.”

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