Cheshire mum asks cyclists to join the Chester Challenge in aid of Dravet Syndrome UK.

Jul 21 2011 by Katie Bamber, Chester Chronicle

A CHESHIRE mum whose son suffers from a rare disorder is asking Chronicle readers to take to two wheels for charity.

Six-year-old Harley Rigler, of Oscroft, has Dravet syndrome, a form of epilepsy which causes up to 40 seizures every month.

His parents Dawn Paterson and Adam Rigler are seeking volunteers for this year’s Chester Challenge, as part of their battle to fund much-needed research into the little-known disorder.

All proceeds from the third annual event on Sunday, August 28, will go to Dravet Syndrome UK, a charity founded by parents of affected children.

“This year is quite exciting for us because we have raised enough money to start research in the UK,” said Dawn.

“Every penny makes a huge difference to us as a small charity. Every £1,000 we make goes straight into that research.”

As well as causing frequent seizures, Dravet syndrome affects Harley’s development, speech and immune system.

“Harley can’t talk very well at all. He can’t tell me if he’s not well, if he has a headache or a tummy ache,” said Dawn.

Despite this, the youngster attends Kelsall Community Primary School with big sister Hannah, eight.

“He’s being exposed to his peer group talking around him,” said Dawn,

“I have never wanted him to be somewhere where he is the best. I’ve always wanted him to look and listen and try to copy.”

She said she worries about Harley’s future, but hopes increasing awareness and funding for research into Dravets may lead to the discovery of a cure.

“We have got to stay positive. I have got to do the best for my little chap.

“I would ask people to get out into the countryside, have a nice cycle ride and do some good in the process.”

The Challenge will start and finish in Chester, taking in some of the area’s most spectacular scenery.

There will be a choice of four routes along country lanes – 12.5 miles (£10), 25 miles (£12.50), 60 miles (£15) and 80 miles (£17.50). Participants will receive free t-shirts and refreshments.

Fundraisers can enter online or download an entry form at www.chesterchallenge.co.uk. For more information, contact Dawn on 07967 405330.