Exactly two years ago today 22-year-old Jordan Kennedy died from an epileptic seizure. His father Colin, the former chief executive of the Mary Peters Trust, tells Ann W Schmidt how launching 'Jordan's Gift' allowed the family to celebrate his life and also to help others.
Colin Kennedy's greatest fear is forgetting the memory of his son Jordan, who passed away suddenly two years ago today. To help him remember the life of his son and to help other people, the former chief executive of The Mary Peters Trust decided to start a charity in his son's name.
"My personal biggest fear - though it is probably not my wife or my son's, and it's probably irrational - is that I don't want to lose my memories of Jordan," he says. "Because although it was only two years ago, memories fade very quickly and I'm frightened of losing those thoughts.
"Starting this charity was a way of bringing me, my wife, my son, my friends, my family, his friends together to say 'Right, let's talk about Jordan'. And every time we have an event, every time we plan an event, although the charity is at the centre of it, obviously Jordan is too.
"It's only in the early days but it has helped us and I hope it will continue to help us on an ongoing basis. Of course, at the same time as it helps us, ultimately we're going to be helping other people too."
Jordan was only 22 years old when he passed away on October 18, 2014. When he was 13 years old, the teenager was diagnosed with mild epilepsy called absence epilepsy. While his family hoped he would grow out of the episodes, he did not and doctors found a small brain tumour called a Hypothalamic Hamartoma. Jordan was told not to worry about it, since it was benign.
Colin, who lives in Baillies Mills, says that Jordan was always friendly and that his friends would refer to him as a "gentle giant". He goes on: "Jordan was a fun-loving and caring kid. He was great fun. He enjoyed life to the full. He was a joker as a kid. He was always up to mischief, but always fun, nothing bad. A fun, mischievous kid. Always laughing, always giggling."
Jordan also cared deeply for his mother and his brother, who both had disabilities. Jordan's older brother Jared was diagnosed with cerebral palsy at the age of three and Jordan's mother Dawn became ill and lost her mobility when Jordan was a young teenager. Colin said Jordan was Jared's friend, protector and carer and he looked out for his mum, too.
"Jordan was the first one in the morning to help her from the room to the living room. He was the one who would get her a cup of tea if she needed it," he recalls.
Jordan also loved sport and played rugby. When he got older, he attended Magee College in Londonderry.
"When he went up there, he soon became a leader of all the peers. They turned to him when they wanted something done... he was the type of guy that everybody flocked around," says Colin with evident pride.
He graduated with a Bachelor of Science in advertising with computing in July 2014. That August he got his first job and moved to Belfast.
But just a few months later in October, Jordan had a major epileptic seizure from which he did not come round. His heart stopped and paramedics were able to restart it but he never regained consciousness and the lack of oxygen to his brain before his heart was restarted caused irreparable brain damage.
The Kennedys then had to decide if they should continue to have medical intervention to keep Jordan alive or not. After difficult deliberation, as a family they decided to let him "pass on".
They instinctively believed that Jordan would have wanted his organs to be donated, but they soon found out that he had in fact already registered as an organ donor when he was just 15 years old. Jordan's organs helped three people, which Colin said has proved a comfort to the family - even though they lost Jordan, he brought life to others.
After his death, Jordan's friends and family tried to think of more ways to honour his memory. Colin says: "We've been grieving and also wondering how best to remember this big guy, this young man with his life in front of him. How can we remember him, and at the same time help others?"
Colin said they had held some events to remember Jordan and their friends and family were raising money, so they decided to put the combine the two together.
"Everyone wanted to do things, lots of friends, family, people he had come across, wanted to donate money and we thought, 'Well, what are you giving money for?'
"Initially we gave money to the Ulster Hospital where he had been cared for when he was ill. And people still wanted us to do something annually to raise funds in his name.
"We thought, 'Why not start a charity in his name because so many people were touched by him in his life?'. They want to keep on remembering him and to hold events to raise funds and we thought, 'We should just do the charity channel, with the funds coming in and then we'll distribute it.'"
The charity, called Jordan's Gift, was something that came about after Colin and his wife Dawn sat down and talked with Jordan's friends and other relatives to see what they thought Jordan would want to do with funds. They decided on a charity for young people with disabilities because both Jordan's mum and his brother had disabilities. They also talked with Jordan's friends and family to come up with a name for the charity.
"There was quite a few different suggestions and then I think one that everyone fell in love with and absolutely thought was perfect was Jordan's Gift. Because one, it's Jordan and two, it's his gift of passing on something to other people.
"When he died so unexpectedly and so suddenly, he passed on the gift of life to others because he donated his organs, which he had decided to do when he was a young man at 15 years of age.
"So it actually tied in very well. Because at Jordan's Gift, we're giving stuff to other people, but Jordan's gift, he gave the gift of life to other people when he died."
The entire process of launching Jordan's Gift has been one that has helped the Kennedys, who were devastated by Jordan's death. "It has certainly helped me and his mum and his brother to focus our attention on remembering him," Colin says.
In the process of honouring Jordan, the Kennedys hear stories about him and learn things about him they might not have known before. Colin says that talking about Jordan is comforting.
"For example, one of the things we discovered from his college tutor was that when one of Jordan's fellow students was struggling, Jordan actually took time out of his classes to go and stay with that student and look after them until they were able to get through their course, which none of us knew anything about. Those kinds of things come across whenever we are talking to friends and family.
"We probably are learning a little bit more about him. Sometimes it's wonderful. There's other bits that we probably didn't want to hear," Colin laughs. "But it's still nice to be able to keep his memory alive in that way."
Colin said that coping with Jordan's death has been difficult, but they try to look at his passing in a positive light.
"We look at the good times we had and we reflect on the fact that we were so fortunate to have Jordan for the 22 years that we did. And we're so fortunate that he touched so many people. And we're so fortunate that he did so many things during those 22 years.
"Saying that, we're also so disappointed of what he won't get to do over the next lot of years because obviously he's gone. But we take great comfort in what he did, in what he achieved and the memories that he's left us with.
"That's probably the best way that we've been able to cope with it. When we're talking to each other we just go, 'Look how much he did. Look what he did achieve. Look how many people he did touch in those 22 years'. If we dwelt on what we've lost, I think we would go to pieces every single day."
Colin, who has experience of running charities, said he hopes Jordan's Gift will be able to help children every year.
"All we're doing is trying to do our little bit to remember Jordan and to help … If this time next year I can raise over £5,000, I will be a very happy dad."
The launch of Jordan's Gift takes place today at the Temple Golf and Country Club in Boardmills, Co Down. Jordan started working there part-time when he was 15 and his work there helped him pay for university.
"It became a very important part of his life, but is now a very important part of our life, because so many of our memories of him are around there," Colin adds.
"Temple actually have been a great help with us starting this charity, with holding functions, with holding the launch, with their members, their staff all supporting any events we're having. They have been a fantastic help to us as a family in the past couple of years but as we start up this charity, Temple Golf Club have actually been there to support us."