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Islington kids Arlo and Darcey inspire 20-strong Ben Nevis attempt in aid of Dravet Syndrome research

PUBLISHED: 15:03 15 May 2017 | UPDATED: 10:59 16 May 2017

The Islington climbers taking on the Ben Nevis challenge in aid of Dravet syndrome research. Picture: Dravet Syndrome UK

The Islington climbers taking on the Ben Nevis challenge in aid of Dravet syndrome research. Picture: Dravet Syndrome UK

Archant

Two Islington kids with a rare severe form of epilepsy have inspired no fewer than 20 fundraisers to climb Ben Nevis in the hope of raising £20,000.

Arlo Wilson with mum Galia. Picture: Dravet Syndrome UK Arlo Wilson with mum Galia. Picture: Dravet Syndrome UK

They both suffer from Dravet syndrome, a complex condition that causes seizures and issues with development.

Arlo Wilson, nine, had his first seizure at just 10 weeks old, although it wasn’t properly diagnosed until he was three and a half due to a lack of knowledge about the condition.

His mum Galia and fellow parent Shereene Mcready – whose daughter Darcey, two, also has the condition – have together rounded up 18 other intrepid hikers to tackle the Scottish peak to raise funds and awareness about Dravet Syndrome.

“People used to think one in 40,000 had this illness,” Galia said. “Now they’ve realised it’s closer to one in 15,000 because so many people weren’t getting diagnosed properly.

Arlo Wilson with mum Galia. Picture: Dravet Syndrome UK Arlo Wilson with mum Galia. Picture: Dravet Syndrome UK

“Dravet Syndrome UK provides a wonderful support network for people – they’ve given me so much great advice and put me in contact with other people in a similar position to me.

“I want to give something back.”

Training for the hike has already begun as the group prepare to tackle the highest mountain in the UK.

“I ran 19km today and to tell you the truth I’m absolutely shattered,” said Galia.

“I know others have been running up and down the stairs of their houses to try and get themselves into better shape for it.”

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