HOPE for Paediatric Epilepsy: Anti-suffocation Pillow Project
Project Category: Informal community group
HOPE started in January 2012 after it was identified by a parent of a child with complex epilepsy that there were no support groups in the Greater London area for families affected by epilepsy. Having a child with epilepsy as well as any other additional needs can be extremely isolating and overwhelming and can affect the whole family.
With the support of our volunteers, HOPE provides a safe space for families to socialise, reduce isolation, build relationships, share information, access support and guidance and most importantly for children to have some fun!
Thanks to Greggs’ generous donation, Hope is able to continue to provide anti-suffocation pillows to young people with epilepsy living in the London area for free.
“Anti suffocation pillows are designed to prevent suffocation during and after seizures to prevent SUDEP (sudden unexpected death in epileptic people) ending the lives of around 1200 people a year in the uk. Having a pillow reduces parental anxiety and allows parents and carers to get a good nights sleep.”
Neil Williamson, Epilepsy Nurse Specialist/Hope volunteer
The donation will allow us to purchase a total of 50 anti-suffocation pillows. Some testimonials from parents whose children have received a pillow include:
“My son was unable to sleep with a pillow before i received the anti suffocation pillow. He is so much more comfortable now.”
“This pillow allows us to rest at night knowing our child would be safe in a seizure face down. Frank loves his new pillow.”
“I slept better knowing the pillow gave my child a peaceful night’s rest.”
“Will give us much peace of mind.”