ALS patient pulls all-night walk in race for better treatments

Deane Gorsline’s wife, Danielle Peters, was at his side as he continued his gruelling walk on Sunday morning on Parliament Hill. PHOTO BY ASHLEY FRASER/Postmedia

Deane Gorsline, 32, is battling advanced ALS and chose an impossibly difficult task to spread awareness about the terminal illness.

Held by supporters, Deane Gorsline slowly shuffled beneath the Peace Tower on Sunday, wearing a bright purple T-shirt in the race of his life.

Gorsline, 32, is battling advanced ALS and chose an impossibly difficult task to spread awareness about the terminal illness and help break regulatory logjams for new drugs and therapies.

He decided to walk — in spurts — for 1,700 minutes (28.3 hours) in honour of an estimated 1,700 sufferers who died between Health Canada’s approval of a new drug and the first province to begin coverage of the medication.

His walk, which went overnight Saturday, was to conclude Sunday at 11:20 p.m. at Walter Baker Park in Kanata, where he is doing loops every hour, supported by a team of about 10.

“The timeline between federal and provincial approval was 574 days,” Gorsline said Sunday, while resting in a wheelchair. “On average, three patients with ALS die every day, so we’re walking for the 1,700 Canadians who died waiting.”

Deane is a combat engineer officer with the Canadian Armed Forces and has served in Afghanistan. Born and raised in B.C., he married a former high school classmate, Danielle, 32, nearly three years ago.

The degenerative neuromuscular disease struck him in the prime of life (at age 29) and Danielle, along with military medical support, is now his main caregiver at their Kanata home.

Deane Gorsline had good friends by his side, helping him with walking across the grounds of Parliament Hill on Sunday morning. Gorsline’s good friend J.C. Ouellet even showed up to the walk with freshly dyed purple hair to support ALS. PHOTO BY ASHLEY FRASER /Postmedia

“Deane is a very stubborn man, very tenacious,” she said Sunday, herself exhausted from pulling an all-nighter at the park. “He’s doing it to prove a point that, if he can walk 28 hours, he wants the world to know why. There is a serious problem with the drug approval process in Canada.”

Both Deane’s parents and in-laws were on hand Sunday, an event timed to coincide with a global ALS awareness day (June 21).

His mother Barbara said Deane co-founded a patient-led group, ALS Action Canada, to push for accelerated drug-approval steps in this country and increase funding for rapid clinical trials, especially for not-fully-tested drugs that might help the terminally ill.

Deane Gorsline’s wife, Danielle Peters, was at his side as he continued his gruelling walk on Sunday morning on Parliament Hill. PHOTO BY ASHLEY FRASER /Postmedia

“Deane is a fighter. He’s a giver and he’s also thinking of the whole dilemma for all ALS patients. So the crisis of hope is they are on the brink of finding things that could be, maybe not curative, but capable of delaying the progress of the disease.”

The illness has taken a soldier who was in top physical shape to someone who struggles to walk, speaks with difficulty and is fed through a tube. There is currently no cure for ALS and patients typically live for three to five years after diagnosis.

The family of Patrick Caden (from Prince George, B.C., Red Deer, Alta., and Prince Edward County) was also on Parliament Hill sporting T-shirts of their lost loved one. Also a military veteran, he died of ALS in April at age 42.

(Family say there is an unexplained higher incidence of ALS among those who served in the military.)

His mother, Patrice Michelle, said they were inspired by Deane’s courage and wanted to make a statement of better awareness and support for families living with the disease.

“We wanted to meet Deane. We’ve followed that young man and he’s unbelievable.”

There were at least three MPs on the Hill as parliamentarians have formed an ALS caucus, partly inspired by the death of Ottawa MP Mauril Bélanger of ALS in 2016.

More information and donation options are available through Deane’s website, www.deaneswalktoendals.com/deane