BenFest in memory of Ben Exley
A village festival to commemorate Ben's 30th birthday.
Ben Exley was only three weeks from his 19th birthday when he passed away due to SUDEP in 2013.
He had been studying for a degree in Business at Northumbria University and having completed his first year, he came home and celebrated with his friends and family. Sadly, he died the next day.
On 27th July this year, family and friends gathered to commemorate and acknowledge Ben’s 30th birthday which was on the 13th June, increasing vital awareness of epilepsy risks as well as raising an incredible £4,600. Ben’s brother, Sean Exley and Ben’s friends; Shannon Brown and Stephen Bewsher, organised BenFest in memory of Ben, which had a true community feel. The festival took place in a pub beer garden in a village in Cumbria and included music by Ben’s friends. Local businesses also donated prizes to aid fundraising alongside the purchase of tickets.
Julie Stobbart, Ben’s Mum, said that Ben loved travelling and had been all over the world, enjoying outdoor activities such as taking part in Cubs and Scouts growing up as well as achieving a Duke of Edinburgh Award.
Ben had his first seizure when he was just 16 years old and was referred for further tests. However, epilepsy was not diagnosed at the time and instead suggested hormonal changes as the cause. Julie had not heard of SUDEP before Ben’s death. She said “You don’t realise how many people pass” due to epilepsy, and that there are “a lot of people who have never heard of [SUDEP]”. As Ben had not been formally diagnosed with epilepsy, there had been no discussions of epilepsy risks or SUDEP.
To learn more about SUDEP and reducing epilepsy risks you can visit our information pages here.
