Jordan Kennedy was 22, fit and healthy until a sudden seizure struck him down
Mary Peters Trust chief Colin Kennedy tells Amanda Ferguson about the heartbreaking death of his son in a bid to raise awareness of a little-understood condition
The chief executive of the Mary Peters Trust has spoken about the tragic loss of his son following his sudden death after an epileptic seizure.
Colin Kennedy's son Jordan died in October at the Ulster Hospital in Dundonald just a few months after his 22nd birthday.
At the weekend, a fundraising golf day and auction at Temple Golf and Country Club in Jordan's memory generated £6,500 for the Ulster Hospital Critical Care Unit and the Sudden Unexpected Death in Epilepsy (SUDEP) charity.
Dame Mary Peters presented prizes at the event attended by BBC broadcasters Gerry Kelly and Stephen Watson and former Northern Ireland footballer Keith Gillespie, among others.
It was an emotional day for the Kennedy family at the event organised by the club where Jordan had worked part time since he was a teenager.
"It was unbelievable how much was raised," Colin said.
"A DVD of Jordan was shown. It was very emotional looking at him over the years from school until just before he died.
"We want to continue his memory and help other people, so this event was a great start."
Colin says he wants other young people with mild epilepsy to be aware of Jordan's story and seek advice about their own condition.
"Young people with mild epilepsy should go onto the SUDEP website to see what the factors are that could lead to something more serious," Colin said.
"Jordan had very mild epilepsy, he didn't have serious seizures at all. But he took a serious seizure on October 12; his heart stopped and his brain was starved of oxygen and he never regained consciousness.
"He was a big, healthy, fit young man with no expectations of anything like that all."
The Kennedy family, from Bailiesmills near Lisburn, have said the support they have received from friends and family since Jordan's death has been overwhelming.
"When Jordan died we had a celebration of his life in the Stormont Hotel and over 650 people attended," Colin said.
"We have so many people, friends who support us all and call with us.
"It has been such fantastic support from people who knew Jordan and us."
Naturally, Colin (52), his wife Dawn and their other son Jared (26) miss Jordan terribly.
Colin paid tribute to the fun-loving former Grosvenor Grammar pupil and Ulster University graduate, he said was like "a second father" in the family.
"It was, and is, very hard for Dawn and Jared, for us all," Colin said.
"Jordan was a real father figure, looking after his mum and Jared, who has cerebral palsy.
"He was a character, fun-loving, funny, gregarious and full of mischief. He could talk and let's just say he fitted in very well with the ladies."
Colin spoke movingly about how Jordan is never far from his mind and how he still expects to see him.
"We miss him every single day," Colin said.
"It is the first thing we think about when we get up in the morning and the last thing we think about at night.
"It is very surreal and although he is gone we are reminded of him every day and I keep expecting to see him. It's tough for Dawn, Jared and I, but friends and family have been brilliant helping to get us through."
SUDEP currently does not have representation in Northern Ireland.
"If awareness and fundraising can result in them setting up some kind of operation in Northern Ireland I will be very pleased," Colin said.
There are at least three epilepsy-related deaths a day in the UK. The majority are classed as Sudden Unexpected Death in Epilepsy (SUDEP), a condition which is still not fully understood.
The charity SUDEP Action cares for the bereaved and works with families and professionals to bring about change. Using research and awareness it strives to get the answers that will ultimately save lives.
For more information, visit www.sudep.org/