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Brave schoolgirl living with terrifying brain aneurysm set to see top specialists in London hospital after rare diagnosis

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dailyrecord.co.uk

A brave Ayrshire schoolgirl living with a terrifying brain aneurysm will see top medics in London after being told she is the only known case of an unnamed disease.Jessica Entwistle who is a ‘whirlwind of joy’ will be seen by specialists this summer at Great Ormond Street Hospital.Medics fear the condition could cause multiple aneurysms with Jessica’s blood vessels becoming entangled — known as AVMs.The seven-year-old, from Ayr, suffers from debilitating symptoms leaving her too unwell to complete full days at school — was told she has a disease caused by a genetic mutation, MAP2K1.Mum Cheryl Entwistle, says her daughter is a “one of a one” meaning she is the only case ever discovered.Both Cheryl, 40, and her husband Thomas Entwistle, 38, say they were devastated when they were told of their daughter's rare condition which has no cure and no confirmed treatment options.Jessica will now visit top doctors down south who will determine an action plan to tackle the disease.Cheryl, a teacher at Coylton Primary School, told Ayrshire Live: “We were horrified when we first found out (about the disease), we just literally went into a complete haze of fear.“Thomas and I often say that we feel like our world is crumbling and we are screaming inside in pain while trying to put a brave face on everyday and make sure Jessica is protected against it all.“It is trying to live for today whilst worrying about tomorrow — it is a lot of sleepless nights.“There is no plan in place until we get to London and when we get there we don’t really know what the plan is.“It's the unknown that terrifies us — Jessica’s disease is full of unknowns.”The Ayrshire Live app is available to download now.Get all the local news in your area – plus features,

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