Photo gallery: Family pulls through for young Dravet Syndrome-sufferer Rebekah Hughes

A day in the life of Rebekah Hughes, 9, who has Dravet Syndrome. Rebekah's mum Annabel fits her nig

A day in the life of Rebekah Hughes, 9, who has Dravet Syndrome. Rebekah's mum Annabel fits her night time monitor. Picture: ANTONY KELLY - Credit: Archant

Living with a rare, life-limiting form of epilepsy means that nine-year-old Rebekah Hughes lives a life somewhat different from her peers. Reporter SOPHIE WYLLIE spent a day with her at her Aylsham home, to see the impact her condition has on her family

Receiving medication four times a day, getting her heart rate and oxygen levels checked, being fed liquid food through a tube, having to ride in her buggy and visiting medical specialists - these are regular features in the day of Rebekah, from Blickling Road, Alysham.

The main focus for her mother and full time carer Annabel, 43, is constantly monitoring her seriously ill daughter who goes to Buxton Primary School.

Mrs Hughes, who gave up her marketing and sales job with Bernard Matthews five years ago, said: 'You don't know if an epileptic fit will happen today or tomorrow. We make every day count so Rebekah can go to bed having had a good day with a smile on her face. Rebekah and I are glued to each other all the time. It is draining.'

Even during sleep the youngster - who has a condition called Dravet Syndrome - can suffer epileptic fits so needs constant monitoring via a machine which records oxygen levels and heart rate.

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If she does have a seizure her parents have emergency drugs to hand but during a serious episode they have to call an ambulance.

Rebekah had her first seizure at 11-months-old and since then has been rushed to hospital more than 200 times – including six occasions where she has had to be airlifted.

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Mrs Hughes, married to Haydn Hughes, 59, said: 'Last week I pointed out a helicopter and Rebekah asked if it was going to take her to hospital.'

Every day Rebekah has to have a variety of drugs - at 7.30am, noon, 5pm and 7.30pm.

If she has had trouble eating the day before - a side effect of Dravet Syndrome - she has to be fed liquid food which she calls space food.

The nine-year-old who has a twin brother called Henry has one-to-one support at school but despite that her mother is on constant alert.

'If I drive out of mobile phone signal I am on the edge.'

She added:'Rebekah is incredibly friendly, sociable and loving. She is happy and secure. When you have children you want them to have certain things like good grades, but that doesn't matter. I'm grateful Rebekah is still here. Anything else is a bonus.'

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