A CHESHIRE family is hoping a sponsor may step forward to help them with a fund-raising event they are planning to help children with a rare form of epilepsy.
Dawn Paterson and her partner Adam Rigler, of Oscroft, have a three-year-old son Harley who suffers from Dravet Syndrome, recognised as one of the most catastrophic neurological disorders. It is a life-threatening, life limiting condition characterized by intractable seizures which often lead to status seizures which can last for hours.
They recently spearheaded a national campaign, alongside two other Dravet mums, Marie Baker from Eastbourne and Amy Thompson from Stockton-on-Tees, to raise the £5,000 needed to form the IDEA League UK, a UK arm of an American-based charity called the IDEA League.
Now they are planning a fund-raising Elvis tribute evening on Friday May 29 at Divas Show Bar in Station Road, Chester, and are hoping that someone may step in to help pay for the cost of the entertainment.
“All proceeds from the event will go the Idea League UK charity to support the many families and children suffering with this syndrome,” said Dawn.
“One of our aims is to fund the purchase of a pulse oximeter monitor that can give alerts through the night for respiratory and oxygen levels. There have been three deaths of Dravet children in the last year through sudden death in sleep and this piece of kit is invaluable to give families peace of mind at nighttime when seizure activity can increase.
“We have already been able to supply four families with monitors and have other families requesting them. Each piece of kit costs about £1,000.”
The only costs we are incurring for the event so far is the hire of the Elvis Tribute Act which is £650. It would be lovely if someone could sponsor the event for us or even make a donation which would help us towards meeting these costs so that we can make sure that the charity gets the full benefit from the event and can pass this onto the families.
Harley, who can suffer up to 100 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 began fund-raising last August when they organised a sponsored cycle challenge, an event they are repeating later this year. Sponsors are also sought for this event.
The owner of the Divas Showbar, Pete Eccles, offered the use of the venue for free after he read about Harley in The Chronicle.
“I thought of doing an Elvis night as Harley loves Elvis songs,” said Dawn. “He quite often dances to Elvis songs and does the Elvis pose.”
Tickets for the event are available from Dawn on 07967 405330 or from the Divas Showbar.
For further details visit the website: www.chesterchallenge.co.uk