Aylsham family on charity mission for daughter’s rare condition
PUBLISHED: 12:12 01 September 2011 | UPDATED: 12:30 01 September 2011
An Aylsham family is on a charity mission to fund research into the debilitating medical condition that has struck their young daughter.
Rebekah Hughes has Dravet syndrome, a rare and catastrophic form of epilepsy for which there is currently no cure.
The brave six-year-old suffers from seizures, has difficulty walking and eating and also has speech problems as a result of the condition.
But as she continues to battle with her symptoms her family have decided to do something to help sufferers across the country and are now organising a fundraising golf tournament for Dravet Syndrome UK. The charity funds research into the condition and provides support and education for sufferers and their families.
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.”
Since she was diagnosed the family has had to face the everyday difficulties Dravet can throw up.
Mrs Hughes, 40, 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 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 had an emergency birth after arriving more then five weeks early, and spent their first few days in the intensive care unit at the Norfolk and Norwich University Hospital.
Soon after arriving home to Blickling Road however, Rebekah started to suffer from 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 email@example.com
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