Peter Wood has never taken time for granted, especially moments in the presence of his two young children. “Every day counts when you can’t take for granted that you’ll have enough time together,” he says. “I wish I could still hug them so they could feel just how much I love them.”

Peter and his wife, Youtaz, used to work long hours during the week, but even after coming home tired from a day at the office, he would immediately change out of his work clothes and head outside to play with the children. “It was the highlight of his day,” says Youtaz. “And on weekends, Peter would always figure out activities we could do together – biking, hiking, walking, taking drives, cottage life in the summer, tobogganing and skiing in the winter.”

In February 2015, the Wood family received devastating news. Shortly after his 48th birthday, Peter learned he had ALS. He was shocked to hear the words from his neurologist, but he wasn’t entirely surprised since he’d been referred to the ALS clinic for testing after encountering concerning symptoms. In the moments after being given the diagnosis, he made a solemn promise to himself. “As I walked down the very long hall at Sunnybrook Hospital,” he types over email, “I set in my mind that I would continue to be positive, that I would battle it with everything I had.”

Peter describes the impact of ALS on his family as “catastrophic” but it hasn’t stifled his grit and determination. During the early days of his illness, he stayed very active despite losing mobility, strength and balance quite quickly. “One of our daughter’s most vivid memories is skiing with her dad after her lessons,” recalls Youtaz. “That was just after his diagnosis. He would pick her up to get her onto the chair lift even though he couldn’t hold poles anymore. He’d bend his arms and use his elbows, like a giant pair of tweezers.”

The passage of time has not shaken Peter’s resolve. He is now completely physically paralyzed with full cognitive awareness. The one exception to his physical limitations is the ability to blink his eyelids, which allows him to continue to communicate using eye gaze technology. That way, he stays engaged, managing family chores like scheduling extra-curricular activities and maintaining connections with the people who matter most to him in his life.

Even for someone as positive as Peter, this year has been particularly difficult. It is hard not to wish there had been more time – time to coach his children’s teams, travel the world together as a family, watch his kids grow up. “Peter spent most of the summer at Sunnybrook hospital recovering from a tracheotomy,” explains Youtaz. “First being away from home for so many weeks and far enough away that the kids couldn’t get there more than once a week, it was a real test of his mental fortitude. We’re still all adjusting to this new reality and Peter continues to try to remain positive in spite of it all. As he says, he’s not done yet.”

In September, Peter attended the Walk to End ALS for the third consecutive year. He and Youtaz were there to help raise awareness about the urgent need to accelerate the funding available for ALS research. They both agree that research is the only hope for the development of effective treatments and possibility of earlier diagnosis.

“There isn’t any time to waste,” says Peter. “ALS is a time-sensitive disease. We feel lucky to be in Canada where research is leading edge. We’re excited by the progress that has been made in the last five years and optimistic that in Youtaz’s lifetime we’ll see great strides made so that this disease doesn’t impact other families the way it has us.”

Youtaz says that every wish Zachary and Siena make when they blow out the candles on their birthday cake is for things to be different – for their father to be the father he used to be.

The close of another year is often a time to reflect on the importance of relationships with loved ones in our lives. Let’s do what it takes to change the future for families living with ALS. Families like the Woods deserve our deepest respect, our compassion and our full support.

Let’s not take anything for granted. It’s time to act now.

Posted in: Stories