THE family of a ten-year-old boy who died from sudden unexpected death in epilepsy (SUDEP) have set their sights on raising £21,000.

Barrie and Jan Burns, who live in Bulford, are supporting the SUDEP Action’s Prevent 21 campaign which aims to raise awareness that 21 people die each week due to epilepsy.

The couple attended the launch of the charity’s campaign.

Barrie said: “It is an honour to do anything for SUDEP Action and to be invited along to the launch and to be recognised for what we have done. We would have never been able to do it without the local support of the community.

“Epilepsy is one of the top premature killers in the UK and our little motto is ‘21 deaths this week are worth fighting’ and we will.”

Charlie died after suffering two seizures within days of each other in October 2011.

Since his death his family have been raising awareness of the condition as well as raising thousands of pounds for charity.

The couple hosted their annual Sunflower Ball on Saturday at the Stones Hotel in High Post, which raised £7,500.

Barrie said: “The event was a huge success. It’s not us who make the evening, it’s our guests who make it so amazing. The Sunflower Ball raised £7,500 in memory of a very special little boy who is so sadly not here to see his wonderful legacy.

“We have pledged to raise £21,000 this year to help fund a paediatric medical research program in memory of Charlie. This is particularly important to us as Charlie was only 10 when he died following a second seizure. Thirty seven of all sudden paediatric deaths are caused by seizures, and epilepsy deaths are on the increase.”

As part of their £21,000 fundraising campaign Barrie and Jan are looking for 21 daredevils to take part in a sky dive on July 7 in Netheravon and 21 runners or walkers to take on the Virgin British 10k run on July 15.

Jane Hanna OBE, SUDEP Action CEO, said: “For our Prevent21 campaign, we are aiming to raise £1 million over the next four years to help shine a light on the shocking fact that 21 people die each week due to epilepsy – half of which are preventable.

"At SUDEP Action, every life and every family is worth fighting for, and there is much to be done.

"Jan, Barrie and Izzie are inspirational supporters who have already made a huge impact not just in their own community, but around the UK.

"They are a beacon of hope for anyone who thinks they don’t have the power to make the world a better place – they are doing it.”

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