Ross waves the flag for EB
From the moment he stepped off the train at Bangor, to his arrival in Cardiff, some 11 days and 250 miles later, the rain failed to stop. “I don’t think there was a dry spell throughout the walk,” said Ross, of Chiswick, who clocked up between 16 and 26 miles a day. “At one point the road was absolutely flooded and I had to be rescued by a police car. A pub had a spontaneous whip round, and in another I had to apologise because when I sat down there was a big pool of water around me. Even my cigarettes were soaking wet.
“I met some lovely people along the way they were pleased to see someone doing something for epilepsy. Even when my phone got drenched and wouldn’t work, a chap from an O3 shop gave me a new battery.”But the wet weather did not put off the Crown Estates assistant manager, who has walked the length of the Thames, paddled from Liverpool to London in a bath and run the British 10km in London for EB and seizure alert dogs.
So far the unstoppable father-of-three has raised over £100,000 in memory of his daughter Karen, 26, an epilepsy patient who died four years ago. And the 53-year-old says he gets as much out of the challenges as the charities he supports. “When I’m by myself I’ve got my mask off,” he said. “I can swear at the world and I can cry. People don’t like to see the tears and raw emotion, but during the walks it’s my time for grieving.
“EB has been just great. When Karen died, I didn’t know what to do,” he said. “When I started hearing things that I should’ve been told – that epilepsy kills – I needed to talk. But I just thought: ‘I’ve got a hairy chest and tattoos I don’t need counselling.’ Until one day I found that I did. “I phoned up Tracy Cowdry, one of the bereavement support workers at EB, burst into tears and put the phone down. Luckily, Tracy called me back. She and her colleague Karen Osland have been a massive support and massive help. I can say things to them that I can’t say to close family members. I don’t have to worry about offending anyone.”
And Ross says he owes so much to his daughters, Ann, 35, and Cathrine, 25. “Everybody tends to focus on me. I lost my daughter – I lost Karen,” he said. “And for the first six to seven months it was that way. But then I woke up and realised my daughters had lost their sister. “Ann copes by doing things and carries me every step of the way, while Cathrine will go off and run a marathon or put things about her sister on YouTube.”
But it is the lack of awareness about SUDEP - the term used when someone with epilepsy dies suddenly, often after a seizure that involves a loss of consciousness – that drives Ross on. He plans to continue telling people about the condition during his next challenge, walking the length of Ireland.
“We have found out more about epilepsy since we lost Karen than we ever did when she was alive. I was never told about SUDEP when she was alive,” he said.
“The one thing I can do is talk and that is what I will continue to do.”