December 7 2013 Latest news:
Thursday, October 31, 2013
A mother has praised her eight-year-old son who has supported his twin sister “emotionally and physically” as well as raising hundreds of pounds for charity.
Henry Hughes, from Blickling Road, Aylsham, won the Carer of the Year accolade in the first ever Stars of Norfolk Awards.
The Buxton Primary School pupil raised £750 for Dravet Syndrome UK this year by selling homemade lemonade, tomato plants grown in his grandmother’s garden, completing a sponsored swim and donating his pocket money.
His sister Rebekah has Dravet Syndrome – a life-limiting epileptic condition.
Annabel Hughes, 42, the twins’ mother and full-time carer for her daughter, said Henry adored his sister.
“He feels like he is Rebekah’s carer and protector at school and in life. They will lie on the sofa and will cuddle each other which is great because she loves hugs,” Mrs Hughes said.
“He helps her with everything from getting dressed and eating to putting her shoes on. He helps her because he wants to.”
Henry, a lifelong Everton Football Club supporter, won a shirt and bag from the club and his sister received a teddy bear. The prize was sponsored by Norfolk County Council.
Mrs Hughes said: “It was absolutely brilliant. We were so pleased that Henry was a finalist and when he won the category it was incredible. It was so emotional.
“We were so proud when he got up on the stage. He is only eight but he looked so grown up. Rebekah was on her feet and was clapping and shouting. She is so pleased.”
As well as his sister and mother, Henry’s father Haydn, 56, and grandparents David and Marion Smith, 78 and 70 respectively, watched the young carer collect his prize.
The youngster, part of Aylsham Football Club and Aylsham-based Sailfish Swimming Club, went up on stage with his sister.
“He is so chuffed. The award is on the middle of the kitchen table and he keeps picking it up. It means a lot to him and hopefully it has made him realise how special he is,” added Mrs Hughes, who said all the finalists were deserving winners.
She added he wore the Everton football shirt all night and Rebekah cuddled her new teddy bear, called Ted, every night.
Rebekah, also a Buxton primary pupil, was diagnosed with Dravet Syndrome just before she was two.
She ended up in intensive care at Addenbrooke’s Hospital, Cambridge, aged just 11 months following a big seizure.
The seizures can stop her breathing and she needs regular medication and constant monitoring at night.
Rebekah also has delayed speech, weaker muscles and finds walking and physical activity difficult so cannot run around.
Mrs Hughes added: “Henry has grown up with epileptic situations and a lot of time when she goes into hospital we have to go with her.
“He has grown up quickly. He has never been resentful of her and feels he has to be strong. The fact he is so giving is amazing and he has got such a lovely nature.”
In June this year Henry raised £300 for Dravet Syndrome UK after swimming 54 widths of Aylsham High School pool, as part of a Sailfish Swimming Club fundraiser, when he had never swum a width before.
The whole event raised £700 for Dravet Syndrome UK and a cheque was presented to Rebekah, who swims with the club.
Henry also melted down his Easter eggs for Rebekah after a tube was put into her stomach to help her eat 18 months ago.
Mrs Hughes said her son was selfless and did not talk about anything that she could not do in front of his sister.
Henry hopes to raise more money for Dravet Syndrome UK by holding a charity golf day at Weybourne on August 14 next year with his parents.