About HOPE for Paediatric Epilepsy
HOPE for Paediatric Epilepsy – London, (winner of the ‘Young Epilepsy Champions Award’ 2014 Best Community Support Group), is a charity run by a team of volunteers for children with epilepsy and their families. It was set up in 2012 by Scott Liddle, a parent who identified that there were no support services for children with epilepsy in the area of North London where he lived. He found caring for a child with complex epilepsy an isolating experience, as it is for many families, so he decided to set up a charity to support those in a similar situation.
Over the past 8 years the charity has grown and now supports many more families through free, monthly clubs based in Whetstone. These are open to anyone that can travel to the venue and provide a chance for children with epilepsy and their siblings to play games, do arts and crafts, use the adapted soft-play room and playground and take part in hosted activities (such as entertainers) every month. The parents also have the chance to talk, exchange information and relax in an informal setting with others who are in a similar situation and understand the difficulties of caring for a child with epilepsy. They can even get a manicure if they choose! The charity also provides free days out and a Christmas party.
The HOPE volunteers are available both at the clubs and online to provide support and information. HOPE also invites epilepsy professionals to give talks to the parents and children at the clubs and provides a dedicated information table containing the latest literature on paediatric epilepsy.
Aside from the clubs, HOPE have always provided anti-suffocation pillows to the children that attend. In 2017 HOPE extended this by starting an Anti-Suffocation Pillow Project – funding pillows for any child with nocturnal convulsive seizures living in London.
HOPE relies on fundraising and donations from the general public despite the great need for support for families with children affected by epilepsy. HOPE exists to provide this support.
For more information, visit our website at: http://www.hopeforepilepsylondon.org.uk/ or our Facebook: @HopePaediatricEpilepsyLondon and Twitter: @HopeEpilepsyhttp://www.dravet.org.uk