Made for each other

When ALS struck her husband, Heather Rea-Macaulay became an advocate, fundraiser and compassionate caregiver

By Amanda Jackman

Phil and Heather in Italy at one of Phil’s modeling jobs in the summer of 2022.

Heather Rea, BA’84, was not looking for another relationship. Previously married, and with three grown children, she was focused on a different path – that is, until she saw a pair of “stunning blue eyes.” 

It was a chance encounter at a grocery store in Thornbury, Ontario Heather was getting out of her car in the parking lot when a gentleman caught her eye. “Now there’s a handsome man,” she thought to herself and went about her shopping.  

In the store it seemed like everywhere she went, he was there. “Every time I glanced up, he was looking at me,” she chuckles. “I was busy planning my mom’s 80th birthday, I wasn’t really paying much attention.” Heather left the market thinking very little of the encounter.  

A short time later, Heather’s friend Shelagh wanted to set her up on a date. “Shelagh said, ‘I have the perfect match for you.’ As it turns out, it was the same guy from the grocery store!” recalls Heather. 

Through Shelagh, phone numbers were exchanged and a few days later, the “blue-eyed man” – Philip Macaulay – texted Heather to go for a swim, and she agreed.  

“I’m so glad I said yes,” the effervescent Heather smiles. “I knew he was a fashion model and thought, ‘Ha! I’m not getting involved in this’, but during the mile-long swim I got to know him, and we just clicked!”  

During the summer of 2019 their romance blossomed. “We had to follow our hearts,” she says. 

Then the pandemic hit. 

“Honestly, it was great for us,” says Heather. “We fell in love and grew closer during the COVID years. We adored being ‘stuck’ together and had the best time.”   

A year later, Phil invited Heather to Sun Valley, where he was a ski instructor. She planned on going for three weeks, which turned into the full season, which turned into the couple unable to imagine themselves living apart. 

It was relationship bliss.  

Heather and Phil decided to retire during the pandemic and spent their time between Sun Valley and Thornbury. The athletic couple swam, skied, biked and travelled together. 

The onset 

In spring of 2022, Phil started to experience some strange sensations in his arms, including bicep twitching. After more than a year of ruling out other possible medical issues, numerous physician opinions and many diagnostic tests, Phil was diagnosed with amyotrophic lateral sclerosis, more commonly known as ALS, in June of 2023. ALS is a debilitating disease of the nervous system that affects nerve cells in the brain and spinal cord, resulting in loss of muscle control.  

"To see a Canadian doctor making huge strides in ALS, right in our backyard!? We had so much hope and it gave us purpose."

The couple was devastated by Phil’s diagnosis, which happened shortly after his brother, Mike also discovered he had ALS. “Phil’s brother died 11 months after his diagnosis,” says Heather. “Phil kept his news quiet until after Mike’s celebration of life in spring of 2024. It was too hard to hide it at that point. Phil lost so much weight.”  

A beautiful distraction 

When Phil was diagnosed with ALS, Heather made a private vow – she promised she would never leave him and would walk with him throughout the course of the illness.  

After a very emotional proposal, Heather and Phil married in the summer of 2024. Phil had never been married before, which made the moment even more meaningful. Phil’s wedding vows movingly spoke to Heather’s devotion, recognizing the quiet sacrifices and strength that defined their love. Their wedding brought them deep joy and was a beautiful and necessary distraction from the disease.  

Determined to squeeze out every drop of happiness from the remaining time they had together, Heather considered Phil’s diagnosis ‘our’ diagnosis – a reflection of her commitment to share in everything, no matter how difficult.  

Heather, who graduated from Western with a degree in social science, went on to get a master’s in exercise science and has worked with women who live with and survive cancer. “These women, despite their illness, had so much resilience and strength. I learned a lot from them and put it into practice in my own life.”  

ALS champions 

The couple also decided to make a difference in the world of ALS. “I had been thinking of what we could do to support a cure for ALS,” says Heather. “We had connections in the United States, and I was considering supporting there. Then we saw Dr. Strong in the news! To see a Canadian doctor making huge strides in ALS, right in our backyard!? Phil's eyes lit up – we were in! We had so much hope and it gave us purpose.” 

Dr. Michael Strong, a distinguished university professor in the Department of Clinical Neurological Sciences at Western, has spent three decades inching ever so close to a cure. “Dr. Strong’s research was exactly where we wanted to put our attention,” says Heather.  

The couple had the opportunity to sit down with Dr. Strong and learn more about the incredible advancements in his research. So inspired, they held a fundraiser in Phil’s name to help find a cure for ALS. Friends and family rallied around Phil accumulating donations of over $140,000. “This was so important to Phil,” says Heather. “It was part of his legacy.” 

Coffee and care 

Heather’s commitment to Phil went deep. After contracting COVID, Phil’s condition worsened. His weakened body struggled to clear his lungs, as he no longer had the strength to cough. Each morning began with a careful routine:gargling to initiate swallowing, followed by back tapping and light massage to move the phlegm he would no longer expel on his own. Only after the morning’s uphill climb was behind them came their pleasant ritual – cappuccino time. 

ALS is an incredibly difficult and debilitating disease. It not only affects the diagnosed individual on a physical, mental and emotional level but also their families, partners and caregivers.  

Heather persevered through the hardships thanks to support from family and friends including her sister Averil and her brother-in-law Joe. “They came up every two weeks with prepared meals and cooked for us. We also had nurses and PSWs to help us. That gave me small opportunities to get groceries and go for walks.”  

Heather spent those quiet walks trying to stay in the moment and allowing herself to release her emotions. She would often cry on those walks and the couple would also cry together. 

Phil passed away on January 3, 2025. The couple only had six years together. “But they were amazing years,” says Heather. 

Before his passing, Phil got all his finances in order. Heather didn’t quite know just how organized he was. She kept finding notes from him everywhere.   

“Phil made it easy on me and never wavered in his commitment. He even had a book where he kept much of the information I would need. It was a testament to his character – caring for me, as I cared for him – together, until the end.”