Fundraising drive for little Isla

Isla Smith from Earlsheaton has Dravets syndrome - her mum (Claire) is trying to raise awareness of the condition. (W534J314)
Isla Smith from Earlsheaton has Dravets syndrome - her mum (Claire) is trying to raise awareness of the condition. (W534J314)
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A mother is on a mission to raise awareness of her daughter’s rare medical condition.

Claire Smith’s daughter Isla is only two years old, but has Dravet Syndrome – a rare form of epilepsy which causes her to have seizures for up to two hours and can lead to learning disabilities.

Mrs Smith, of Chatsworth Terrace, Earlsheaton, said: “Whenever Isla has these seizures, it really affects her development.

“Sometimes she’ll go a week or so without having one, and we’ll be really happy, but then one of the seizures strikes and we’re back to square one.

“Every time she has one, it knocks her back and really affects her development.”

But, after recently raising more than £500 for charity Dravet Syndrome UK with an online raffle, she wants to continue to raise awareness.

“The raffle was an amazing success, and my family and friends have been brilliant – they have really supported us through this tough time.

“We’re keen to do more to support the charity and educate people about the disease.”

Mrs Smith said that her daughter’s condition had far-reaching consequences on their lives.

“We can’t go on holidays abroad,” she said. “The fact that she could have a fit on a plane and would need immediate medical attention is just not something we can consider.

“I used to not even leave the house, but the charity has made things a lot easier for us. They helped put us in touch with families going through similar things to us, and we now just want to help them.”

Mrs Smith said the family are already looking to do more fundraising activities for Isla’s condition – and have now started planning a 60-mile charity bike ride to raise money for Dravet Syndrome UK.

She said: “None of us even cycle, so we’ll have to start training pretty soon! “I just think its so important to educate people about this condition to the public. It is not something where we can just raise money for an operation – she will have this her whole life.”