Their 8-year-old son dreamed of crossing Canada. When he died, his family trekked to support new Ont. hospice

ii weeks before eight-year-old st. Luke dr. Johnson died in hospice, he "emphatically" told his parents he wanted to goal what his hero of alexandria Terry Fox had started — to run across Canada, said his dad Dan. 

It only made sense that shortly after the Port Dover, Ont., boy died last July of a brain disease while receiving palliative care, Dan and Luke's mom Jill started planning a way to honour him and his dream in their own way.

They also wanted to give back to their community by raising money for a new hospice to serve Norfolk and Haldimand counties. 

"I think we pulled it off," said Dan.

This summer, in a project called Live Like Luke Canada Crossing, Dan cycled from Vancouver to Port Dover with Jill and their two other kids Hosanna, 12, and Pearce, 11, encouraging him from an RV. It took them 48 days in total, including three rest days, and they've raised over $300,000 for the hospice and counting.

"Luke was very fierce and determined," said Jill. "He loved cycling — he actually rode without training wheels when he was just three years old, which is pretty intense. He would've loved this journey and I think he would've loved that we did it altogether as a family." 

Luke spent his last weeks at the nearest hospice in Brantford, a 45-minute drive from Port Dover, which provides end-of-life care for people with terminal illnesses.

Norfolk and Haldimand counties, with a combined population of about 120,000, do not have their own hospice.

Luke's family and dog stayed at the hospice with him, too — one of the "wonderful things" offered to them through the service and something Dan and Jill want to be available to their local community. They also wanted to raise awareness about the necessity of palliative care. 

Norfolk & Haldimand Hospice, which offers bereavement services, has been working since 2019 to open a facility, said executive director Andrea Binkle. Last year a local man, Alan Williamson, donated 10 acres for the building in Jarvis.

The Ministry of Health has promised funding for some nursing and personal support worker costs costs, Brinkle said. But the hospice group will need to raise enough money through private donations to build and operate the facility.

In total, it will cost $14 million to build and about 25 per cent has been raised, said Brinkle. They're aiming to break ground next year. 

"It's heartbreaking to think people who've lived in one of the counties their whole lives have to leave home to spend their last days," Brinkle said of residents who require palliative care and must go to Brantford.

"Dan's journey has really put a spotlight on the hospice and what we do and the impact of having a lack of services in Haldimand-Norfolk." 

Dan is not new to endurance sports having completed two Ironman triathalons and most recently this year's Boston Marathon. Riding his bike across Canada in honour of his son brought its own challenges. 

"On the bike, every day, I am thinking of him, but it's also sad I'm doing things he'll never get to do," said Dan. "Is there healing there? Who knows. But we are doing the best thing we can, which is moving forward." 

His favourite province to ride through was British Columbia, with a different type of beautiful scenery every day, he said. The Prairies had their own type of "beauty and peacefulness" but were monotonous, he said. 

The most difficult stretch was northern Ontario, which he described as a "raging inferno of up and down, shredding your legs and no recovery" and having the most dangerous roads of the trip. 

While Dan rode, Jill and the kids would find something fun to do — swimming or hiking — and catch up with him throughout the day. 

She said the trip drew their family together. 

"Over the last couple of years our attention was necessarily driven toward Luke and his care," Jill said.

"Our other children were wonderful about that, but just to reconnect with them on a daily basis, doing things they'd like to do and be present with them, I would say it was helpful for our family." 

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