AN Army family from Wiltshire who lost their son to Sudden Unexpected Death in Epilepsy (SUDEP) have attended a reception at 10 Downing Street hosted by Samantha Cameron for the charity SUDEP Action.
The event included experts, policy makers and bereaved families.
Charlie’s story
Charlie Burns was only ten years old when he died from SUDEP in October 2011.
Since his death, his family have worked with the charity to raise awareness and support research into SUDEP.
Epilepsy claims at least 1,150 lives in the UK every year; about 500 of these are SUDEP.
The Burns family 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 deaths.”
Hope for early detection
Funds raised from the appeal will sponsor research into a miniature Wireless Apnoea Detection Device (WADD), proven to detect apnoeas which can cause sudden death.
Jane Hanna OBE, Chief Executive SUDEP Action, said: “At the moment there is no reliable method to detect apnoea in the home, with the consequence being that there are hundreds of preventable deaths every year in the UK.
“We are grateful for supporters like the Burns family who continue to raise funds for the charity and make such projects possible.”
Show your support
The family have already raised more than £32,000 for the charity through their fundraising page www.justgiving.com/SUDEP-Awareness; all funds go towards the £165,000 cost of the WADD.
For more information about the charity, including how you could get involved, visit www.sudep.org