Reducing the risk of SUDEP
To provide grants for night-time breathing (SATs/Epilepsy) monitors, for use in the home, for families of children with drug-resistant epilepsy who are at a high risk of SUDEP (sudden unexpected death in epilepsy patients).
January 2015 - December 2015
The Daisy Garland
Children with drug-resistant epilepsy are at a very real risk of SUDEP, over 1,000 people die each year from SUDEP and a high percentage of these deaths happen at night or when they are asleep. The findings of the NICE (National Institute for Health and Care Excellence) Audit 2002 found that 42% of deaths were potentially avoidable.
Fear of SUDEP has a detrimental effect on the quality of life of the whole family, parents struggle to sleep, often sharing a bed or room with their child.
Night-time breathing monitors save lives and give families peace of mind at night allowing children to sleep safely in their own bedrooms. Their parents are able to sleep knowing that the monitor will alert them should their child have a seizure whilst their child has the independence of sleeping in their own bedroom without the need for constant supervision. This dramatically improves quality of life for the whole family.
To provide grants for night-time breathing monitors to the families of children at risk of SUDEP.
Activities» To raise funds to allow us keep up with requests from families for grants.
» Obtain written approval from a medical professional for each individual monitor request which we receive.
» Obtain a signed agreement from each family before a grant is issued.
Success will be to help as many of the families, who contact us asking for help with a monitor, as we possibly can.
Each monitor grant has a far reaching effect on the life of the child for which the monitor is intended, as well as for the child's immediate and extended family. We demonstrate the success of the project by contacting the families who have received a grant twice a year, we always receive very positive feedback from parents whose lives have been transformed because of the peace of mind which these monitors bring, not to mention lives saved.
By obtaining written agreement from a medical professional we can be sure that a monitor is a suitable choice for each family we help.
We produce a bi-annual newsletter which we send to donors and we update donors with the feedback which we receive from parents.
Budget - Project Cost: £75,380Loading graph....
Amount Heading Description £20,880 SATs monitors Providing an estimated 30 monitors over a 12 month period £54,500 Epilepsy monitors Providing an estimated 50 monitors over a 12 month period
From January to June in 2014 we have given grants to 48 families from across the UK. We want to continue helping as many families as we possibly can and so need the funds in place for next year.
We are a well established charity celebrating our 10th anniversary this year.
We have been successfully giving grants for night-time breathing monitors since 2008 and have seen the rise in awareness of the dangers of SUDEP which has led to a dramatic increase in demand for these monitors.
We know how tough life is when you are on 24 hour alert for the next big seizure and how damaging sleep deprivation is for the whole family.
Read more about the Charity running this project.