Aylsham family’s fundraiser for daughter’s rare condition
PUBLISHED: 16:46 07 September 2011
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 wheelchair and the next be struck down by a seizure or fit as she battles with Dravet syndrome - a rare and catastrophic form of epilepsy for which there is currently no cure.
The brave 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 Rebekah faces her condition with no complaints and her family is now organising a fundraising golf tournament for the charity Dravet Syndrome UK.
Rebekah’s mum Annabel said: “Me and my husband decided to do it to raise awareness and at the same time raise money for research into Dravet because it’s very rare there’s not a lot of money there for research.
“When Rebekah was diagnosed she was the first person in the whole region, even the consultant at the time said realistically he didn’t know much about it.
“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 so and doesn’t really complain about it.”
But 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 and spent their first few days in intensive care at the Norfolk and Norwich Hospital.
Soon after being discharged Rebekah started having seizures and was diagnosed with Dravet just before Christmas 2006.In the first two years of having the condition the youngster was rushed to hospital once every three weeks, including several times in an air ambulance, and on many occasions had to put onto a life support machine.
But despite the difficulties Dravet presents she has been determined to stay in a main stream school and attends St Michael’s School in Aylsham with a one to one carer.
Mrs Hughes, 40, said: “She really does try to and keep up. A lot of it is hard for her because her development was delayed because she’s spent so much time in hospital but she does her best and she’s hopefully going to go into the same class as her brother next year.”
More than 20 teams have signed up to play in the family’s charity golf tournament, which is being held at Woburn Golf Club near Milton Keynes as it is an easier location for players from across the country to get to.
* If you would like to take part in the tournament on October 20th, or can help by donating prizes for the raffle and auction, email Mrs Hughes on firstname.lastname@example.org
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