THE family of a ten-year-old who died from Sudden Unexpected Death in Epilepsy joined Samantha Cameron at 10 Downing Street to launch a fundraising appeal.
The event last month launched SUDEP Action’s appeal for research into a sleep monitoring device that could help prevent SUDEP.
Charlie Burns was ten when he died from the condition in October 2011 and his parents Jan and Baz and sister Izzie, who live in Bulford, have been raising awareness of the condition since and fundraising for the charity SUDEP Action.
Mrs Cameron met with charity supporters and staff at the Downing Street reception and local MP Claire Perry, who is a SUDEP Action patron, attended with the Burns family, who are in her constituency.
Funds raised from the appeal will sponsor research into a device – a miniature wireless apnoea detection device created by Dr John Duncan of University College of London – that will alert carers to dangerous apnoeas that can cause sudden death.
Mrs Burns said: “When Charlie died, we could not imagine how life could carry on without him. Life is never the same after you lose a child. We still grieve but we are also proud to be involved with SUDEP Action and help prevent unnecessary epilepsy death.”
At least £165,000 is needed to test this device on people with epilepsy as the next step towards a system that may be reliable for preventing SUDEP.
The charity is also promoting the first register of epilepsy deaths in the UK, aimed at supporting research into epilepsy deaths. It is providing researchers with vital clues that will help them understand and ultimately prevent SUDEP.