Live like Luke: A journey to help bring a hospice to Norfolk-Haldimand
Dan Johnson will be cycling from Vancouver, B.C. back to his home in Port Dover over the summer to honour his son Luke who died of cancer at the age of eight, and to raise money for a soon-to-be-built community hospice in Norfolk-Haldimand.
The journey was born out of the Johnson family's experience of having to use an out-of-town hospice for Luke when he was in his final days.
'We were in the Stedman Community Hospice in Brantford and it was absolutely top-notch,' said Dan.
'We don't have a palliative care centre in our community where we live. We have 120,000 people in our two counties of Norfolk and Haldimand, yet we don't have a hospice for us,' Dan added. 'So, our options in palliative care would just be in the hospital, and that's not a good experience for people… It's going to be a last earthly home for people that are in that phase of life and it's going be just an amazing environment.'
Why cycling across the country?
Dan said his journey really started about two weeks before Luke died, they were reading about Terry Fox who he said was a hero to his son.
'He [Luke] asked 'what happened to Terry, why did he stop running?' We explained to him what happened and that was the moment that he, for the first time that he connected the dots the fact that he [Luke] was going to die from his disease,' said Dan
LUKE JOHNSON
Luke Johnson (Source: Submitted)
'And as an eight-year-old boy in the moment, we saw him connect the dots in his mind. It was the worst imaginable time for my wife and I. He looked at us in the eyes and he said, 'Well, I'm going to run across Canada one day,' just like that matter of fact, he was going to do it,' Dan added.
He said Luke wanted to keep living to love his family and to be with his friends, there was no quit, even when he knew he was facing death.
'He still in his mind was absolutely committed to live. And so that's why we're going across Canada.'
The journey
On Sunday, the Johnson family will fly to Vancouver and on July 1, Dan will start his 53-day journey home from Stanley Park.
His wife Jill and his two kids, Hosanna and Pearce, will follow along in an RV until they arrive back home near the end of August.
If all goes according to plan, Dan said he hopes to come through Port Huron around Aug. 20 or 21. He'll then bike through Exeter where his brother, sister-in-law and their kids live, and then on to Port Stanley and back home to Port Dover.
Dan plans to cycle anywhere from 130 to 150 kilometres a day, and he said he welcomes anyone who wants to join, to ride with him for any portion of the journey to help get him home.
Not a stranger to adversity
To be able to do the bike ride, Dan has had to overcome injury.
In November 2023, when Luke was still alive, Dan qualified for the Boston Marathon, a race Luke ultimately wouldn't get to watch.
Still committed to completing it, Dan ran the marathon on April 21, 2025, what would have been Luke's ninth birthday.
At kilometre 17 of the race, Dan stepped on a water bottle on the course and broke his ankle.
'I convinced a paramedic to tape it up. Against their desire to do so, they wanted to get me to the hospital, but I said I said I'm finishing this race in honor of my son. That's why I'm here.'
DAN JOHNSON - LUKE JOHNSON - JUNE 2025
Dan Johnson is pictured with his son Luke in November 2023, after finishing a race that qualified him for the Boston Marathon. (Source: Submitted)
Dan said he's still recovering from the April injury, and by no means is he 100 per cent.
'But you know what, that's life,' he said. 'You know we're never 100 per cent, and that sort of life and he [Luke] persevered. He believed that he could still do it, [fight cancer] he never gave up. He never quit he kept fighting, he persevered. So, I think I was meant to step on that water bottle because that's just going to be part of the story.'
When he thinks about how Luke would react to his summer mission and his goal to raise funds for a hospice in his community, Dan said, 'Luke wouldn't be sitting, he would be going and that's why we have to do this project, because I don't know, we just have to go and do it. We're going to honor Luke and we're going to do it just the way he would. It will be Luke Johnson riding that bike and Luke Johnson getting all the credit for everything.'
DAN JOHNSON - BOSTON MARATHON - JUNE 2025
Dan Johnson was injured while running the Boston Marathon on April 21, 2025. (Source: Submitted)
The Norfolk-Haldimand Community Hospice will be built in Jarvis, Ont. near Highway 6 and Highway 3, on 10 acres of donated land.
Executive Director Andrea Binkle told CTV News they hope to have a shovel in the ground by the end of 2025.
Architects have said it will take 18-24 months for the building to be completed and ready for occupancy.
The 16,000 square foot facility with 10 beds has a budget of $14 million. According to Binkle, just over $4 million has been raised so far from community and private donations.
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