Aylsham family on charity mission for daughter’s rare condition

Every day can present a new challenge for the Hughes family as their daughter, Rebekah, deals with the effects of a rare medical condition.

At one moment she can have extreme difficulties walking and have to use a wheelchair and the next she can suffer a seizure or fit as she battles with Dravet syndrome – a rare form of epilepsy for which there is currently no cure.

The six-year-old from Aylsham also suffers from problems with her speech and eating, meaning she sometimes has to be fed through a tube.

But she faces her condition without complaint and her family is now organising a fundraising golf tournament for the charity Dravet Syndrome UK.

Rebekah's mum, Annabel, said: 'We decided to do it to raise awareness and at the same time raise money for research into Dravet because it's very rare and there's not a lot of money there for research.'

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She added: 'It tends to go through stages where she has extreme problems walking, then we hit on not being able to eat or swallow then she'll start to double up with seizures. There's always something that comes up, but obviously she's the one that has to deal with it and does so remarkably.'

This is not the first time the family has faced medical difficulties as Rebekah and her twin brother, Henry, were born more than five weeks early. Just a few months later she started having seizures and was later diagnosed with Dravet.

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More than 20 teams have signed up for the fundraiser at Woburn Golf Club near Milton Keynes, chosen for its accessible location for players. To take part email Mrs Hughes via annabelhaydn@aol.com

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