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Mum's sponsored walk to highlight son's rare condition

by Hayley Robinson

A mum has organised a fundraiser to help raise awareness of a rare form of epilepsy.

Fiona Cameron’s 18-year-old son John (pictured) suffers from Dravet syndrome – a neurological condition which results in frequent, often prolonged seizures that can lead to speech impairment, developmental delay, and other problems.

He was diagnosed at the age of three and has deteriorated both physically and mentally over the years, so much so that he is now confined to a wheelchair.

To highlight the condition, the mum-of-two has arranged a sponsored one-and-a-half mile walk around the grounds of UK Paper Sports Pavilion, in Gore Court Road, Sittingbourne.

Friends and family, who live in the town, will be among the group of 40 people when they set off at 11am tomorrow (Saturday).

The walk will be followed by a barbecue, bouncy castle, children’s funfair rides and face painting. There will also be variety of stalls selling items such as arts and crafts, jewellery, perfume and cakes as well as a raffle and tombola.

Family members Jason Edwards and Edward Deehley have also volunteered to have various parts of their body waxed at 2pm.

Mrs Cameron, 37, from Sevenoaks, said: "John suffered his first seizure at five months old and he didn’t have another until he was eight months old, but the second one put him in intensive care.

"My husband Paul and I were told he wouldn’t make it but he pulled through.

"He carried on having fits and was developing fine but between the ages of two and three we noticed he had learning difficulties. That’s when he was diagnosed.

"He was still walking up to the age of nine when he started needing support. By the age of 15 he was in a wheelchair. He’s affected quite badly but there are some children with Dravet syndrome who have more problems than my son."

The event, which goes on until 4pm, is open to the public. Entry is £1 per person or free to those under the age of 16.

All proceeds raised on the day will got to the Dravet Syndrome Foundation, which raises funds for research into the condition.

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