Aylsham youngster awarded for helping twin sister fight rare condition

A selfless six-year-old has been awarded for the unwavering and tireless support he provides to his brave twin sister as she battles with a rare medical condition.

Henry Hughes from Aylsham was recognised by a national charity for the part he plays both physically and emotionally in helping his sister Rebekah live with Dravet syndrome - a rare and catastrophic form of epilepsy for which there is currently no cure.

As a result of her condition Rebekah can often have difficulties walking, eating and talking but her brother is always thinking up games to help her overcome these problems as well as looking out for her at school to make sure she never feels left out.

And on top of receiving his young carer award from Cerebra - a charity which helps children with neurological conditions - the young ambassador was set to help raise awareness of Dravet by appearing on national TV this morning.

A team from ITV's Daybreak was due to visit the family home today to interview Henry about how he helps his sister.


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His mum Annabel, 40, who nominated him for the Cerebra award, said: 'We're incredibly proud of him. At six-and-a-half-years-old the amount he takes on himself, the responsibility, it's amazing.

'He reads to her and helps her when she can't reach things and helps her with her mobility. He's always doing games with her (to help her eating). He'll let Rebekah feed him, even things he doesn't like, just so that she'll then have something.

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'And he leaves her little letters with food saying 'if you eat this I'll buy you a comic' and tries to do that with his own money.'

Henry, who atteneds St Michael's School in Aylsham with his sister, was picked by a panel to receive the young carer accolade and travelled with his family to Gloustershire to receive it at a glittering gala dinner on Monday.

'He was absolutely thrilled. He's very proud of his award, it's going with him everywhere at the moment,' Mrs Hughes added. 'I think he's realised now that he does things that are special and caring so it's really nice for him to be recognised.

'Going to the awards in itself was a big deal because we don't go on holiday because Rebekah finds it too much to go somewhere and we need a hospital within easy reach. So for Henry it was a holiday as well.'

And the family had more cause for celebration after a charity golf tournament they organised in aid of Dravet Syndrome UK smashed their fundraising target.

Mrs Hughes, along with husband Haydn, organised the event at Woburn Golf Club, near Milton Keynes - which players from across the country attended - last month and raised a whopping �15,000.

She said: 'We're so pleased, we put an enormous amount of hours into it. Everyone had a great day and to raise �15,000 just makes it worthwhile.'

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