3

Marilyn MacKay 1951-2009

Ailing herself, she campaigned tirelessly for more government aid for out-of-province patients


 

Marilyn MacKay 1951-2009Marilyn MacKay was born in Sydney River, N.S., on June 9, 1951, to Marion and Frank Rossetti, who worked at a nearby steel plant while Marion stayed home with the kids. With two older brothers and a younger sister, little Marilyn was “full of fun,” says Laura Ongo, who grew up across the street. One night, Marilyn and Laura decided to pierce nine-year-old sister Karen’s ears. “We said we’d only do it if she didn’t howl,” recalls Ongo, now 62. “We got a potato and put it behind her ear, and put a towel in her mouth.” Karen, pleased with the new look, hid her pierced ears behind her hair so her parents wouldn’t see.

After high school, Marilyn moved to Halifax to find a job. A talented cook, she got work in the kitchen at the Victoria General Hospital, and soon moved in with a friend, Glenda MacKay. One night, Glenda’s brother Ken came for a visit, and was struck by Marilyn, who wore her light brown hair almost to her waist. “She was such a happy person,” says Ken, now 58. “I went home that night thinking, what an incredible girl.” They were married in a double wedding on July 13, 1974, with Karen and her fiancé.

In 1976, the couple bought their first home in Sydney River. Ken was working as a merchandise manager at Shoppers Drug Mart; the company asked to transfer him to New Brunswick, but he and Marilyn “wanted to settle down and have a family.” Instead, they moved to nearby Arichat on Isle Madame, and opened MacKay’s General Store. Ken claims they were the first to sell donair pizza, which was soon on the menu at places in Halifax, too. “Should have patented it,” he jokes.

In 1980, the couple’s first child, Andrew, was born, eight weeks premature. “The first 30 days, he was in the hospital, and his lungs weren’t developed,” Ken says. “It was scary. You’d walk in there, and see a little three-pound child, hooked up to temperature probes.” (Today, Andrew is “healthy as a horse,” his father says.) After Mark was born in 1984, the boys would play in the store, which was attached to the family home, while their parents minded the counter. In 1991, struggling to compete with bigger chains, they finally sold. Ken took a job at Clearwater, a seafood company; Marilyn worked at a restaurant, where her cooking was always in demand.

A few years ago, Marilyn started having “a little tickle in the back of her throat,” Ken says, but it didn’t seem too serious. In 2006, at the cemetery for her mother’s burial, she “took an awful coughing spell,” and had to go straight to the hospital. Her lungs, she was told, were packed with scar tissue. “The doctors figured when she was little, she had double pneumonia, and scar tissue formed inside the lung,” Ken says. “Over the years, it joined together.” Marilyn would need a double lung transplant.

But the procedure isn’t available in Nova Scotia, so she left for Toronto in August 2007, moving in with her brother Bobby in Mississauga, and later with a nephew and niece in Oakville, to wait for a new set of lungs. At the time, the Nova Scotia government didn’t cover travel and living expenses for patients like Marilyn, so money was tight; by August of last year, Ken and Marilyn’s life savings were nearly gone. She almost had to give up and come home, until the Lung Association of Nova Scotia stepped in. The couple campaigned tirelessly for funding from the provincial government, making Marilyn the “poster child of the whole campaign,” says Dartmouth resident Trevor Umlah, who was in the lung transplant program with Marilyn (he got a double lung transplant in 2007). Their activism paid off when, last December, Nova Scotia said it would put $1,500 a month toward living expenses for out-of-province patients like Marilyn. “We finally got the money,” Ken says. “She was really happy.”

But she missed home. Waiting for new lungs, Marilyn had to stay within two hours of the hospital at all times, in case they became available, and couldn’t return to Arichat. Despite frequent visits from loved ones, Marilyn was “lonesome,” Ken says. In October, Marilyn finally got the call: her lungs were ready. The procedure was a complete success, Ken says. Two days later, Marilyn was improving. Over the moon with happiness, “I thanked her for the 38 years, and the two beautiful sons she gave me,” Ken says. “I told her that, if I ever had the chance, I would never change a thing.” On the third day, perhaps due to an infection, Marilyn took a turn for the worse. Her heart rate skyrocketed; her blood pressure went down; her lungs, Ken says, filled with fluid. Marilyn died not one week after the transplant that she’d spent more than two years waiting and fighting for. She was 58 years old.


 
Filed under:

Marilyn MacKay 1951-2009

  1. This is a beautiful story.I am her sister inlaw and it made me laugh and it made me cry.I love you Marilyn,i will always remember how much you made me laugh.

  2. A very wonderful article you have here. I hope many will be inspired by this one.

  3. When I found out I needed a double lung transplant. I am also from Nova Scotia. I began the fight for more help from the government as well. Marilyn helped us so much,without her fight there would be no way I would be in Toronto now awaiting a transplant. But the fight is not over yet. I must support my caregiver with the little less then $1000.00 per month I make on pensions,,plus continue to pay expenses back in Nova Scotia I still have. No life should have a price on it. But to have a transplant so we can live does have a price. I say thank you Marilyn for your fight and it is so sad she didn't get to enjoy life longer.

Sign in to comment.