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‘Live Now’: How One Orillia Man is Defying ALS with Hope and Purpose

2025-06-03

Author: Jacques

A Courageous Journey After an ALS Diagnosis

In a heart-wrenching twist of fate, Mark Combot, a 62-year-old resident of Orillia, was given the grim news of a two to five-year life expectancy following his ALS diagnosis on July 19, 2024. Yet, instead of succumbing to despair, Combot is seizing the moment to cherish life and spread awareness about the debilitating disease.

Facing ALS: A Devastating Reality

Before his diagnosis, Combot experienced unexplained weakness and was briefly misdiagnosed with a pinched nerve. A surprise EMG test revealed the harsh truth: ALS, a progressive and terminal disease that robs individuals of their ability to walk, talk, and breathe. With no cure in sight, he faced a life-altering reality.

Making Every Moment Count

Combot, who has left his job and adapted to life with support workers, has a new mantra: 'live now.' He and his wife, Darlene Farr, are prioritizing experiences over items. From watching the Miami Dolphins play to visiting their daughter in Edinburgh, they are determined to create lasting memories while they can.

From Despair to Activism

As he prepares to cut the ceremonial ribbon at the upcoming Walk to End ALS in Barrie, Combot aims to raise awareness about the disease. He shares his story on social media, connecting with others living with ALS, and advocating for more research and community support.

Voicing the Unspoken Struggles

Combot emphasizes that many people lack awareness about ALS. With a calm but urgent voice, he states, "People don’t understand this disease; they think it’s just a cold. They need to grasp its severity." Through his TikTok videos and local support group, he finds strength in shared experiences and builds solidarity among those affected.

The Fear of Time Running Out

The ticking clock weighs heavily on Combot as he waits for assistive devices that could improve his quality of life. Despite advances in research, he feels the pace isn’t fast enough to match the progression of the disease. "I’m waiting months for the tools that could make life easier, and that feels like an eternity," he confides.

The Power of Hope and Action

Even in the face of a death sentence, Combot's hope shines through—not just for himself, but for future generations. His advice resonates beyond the ALS community: live in the present, express your feelings, and don’t delay in pursuing what truly matters.

Join the Fight on June 7

As Combot readies for the Walk to End ALS on June 7, surrounded by family and friends, he stands proud, not just for himself but for countless others battling this unforgiving disease. "I’m proud to do this and to still be here," he states. This event won’t merely mark the start of a walk; it symbolizes a relentless fight for awareness, funding, and a reminder to cherish every fleeting moment.