A CHESTER family’s fundraising efforts have brought them a step closer to their dream of setting up a UK arm of a charity which helps children suffering from a rare form of epilepsy.
Despite the rigours of caring for their young son, Harley, three, who suffers from Dravet Syndrome, recognised as one of the most catastrophic neurological disorders, Dawn Paterson and her partner Adam Rigler, of Oscroft, have raised £3,000 toward the £5,000 needed to set up a UK arm of an American-based charity called the IDEA League.
When Harley, who can suffer up to 80 seizures a month and needs watching 24 hours a day, was diagnosed with the rare disorder at the age of 18 months, Dawn and Adam turned to the non-profit organisation for help.
They decided a UK branch would be invaluable for families here.
Nationally, £4,500 has been raised and Dawn and Adam are organising more fundraisers.
A pre-Christmas coffee morning in Tarvin brought in more than £400, a signed Everton football raised another £250 and £30 was made in Christmas card sales.
It is hoped sponsored back-to-back gym classes through a link-up with Old Hall Country Club in Huntington, and another cycle challenge later this year, will help them reach the target.
Dawn says the charity is now looking for a patron in the UK. “We definitely have our work cut out but the most important thing we want to do is offer families the financial and emotional support to make their lives easier and less stressful.”
For more details, call Dawn on 07967 405330.
