‘She’ll do anything to get food’
Rare genetic disorder means daughter will root through garbage. The answer? Swimming — and locked cupboards
MONTREAL— The most powerful woman in Canadian sport gazes intently from the stands. As boss of Own The Podium, Anne Merklinger is known to spend every waking minute of her day thinking about how Canada can win more medals at the 2012 London Olympic and Paralympic Games.
But not right now. This is much more personal. Her daughter, Meagan Michie, just dived into the pool for her race at the Canadian trials.
Fit and trim, her reddish hair tucked under an orange racing cap, the 22-year-old looks every inch the fighter scrapping for a spot on the Canadian Paralympic team here. But Michie has a much, much tougher battle to wage.
She has Prader-willi Syndrome, a rare genetic disorder that causes a permanent hunger for food, to the point where her family must lock the fridge and cupboards at home.
“She was diagnosed at about a year,” says Merklinger. “People with this disorder, they crave food endlessly. So, she’ll do anything to get food. She’ll go into garbage cans. She’ll steal it. She’ll do anything.”
As Merklinger puts it: “Swimming’s a salvation for her and for us.”
Whereas most people suffering from the syndrome become morbidly obese, Michie carries about 95 pounds on her 5-foot frame. Low muscle tone is part of the disease, which results in delayed motor skills. Merklinger said her daughter’s IQ is about 55, but she doesn’t let anything hold her back. “For us, it’s always: the cup’s three-quarters full, not three-quarters empty,” says Merklinger. “Our mission is to, as parents, give Meg every opportunity to excel. In school, they said she’d never graduate from high school, never go to college. She’s so determined. She’s so stubborn. She graduated from Algonquin with a diploma in office administration.”
That stubbornness also enabled her to make a comeback from back surgery two years ago that could have ended her swimming career. She had severe scoliosis, or curvature of the spine, and had a ninehour operation to place two-footlong titanium rods in her back. It forced her to relearn her swimming strokes, but she is now approaching pre-surgery times in the pool.
She won four gold medals for Canada at the 2011 Special Olympics World Summer Games in Athens, and also competed for Canada last summer at the Parapan American Games in Guadalajara.
Like her mother, Meagan is pretty straightforward when she speaks. As far as she was concerned, nothing was going to hold her back from her dream. “I really wanted to make the Paralympic team some day, and I know for that to happen I had to overcome this back surgery and then train hard and get back to training,” Meagan said. “I love the sport. I love travelling the world and spending time with my Para teammates and my team. I love it because it’s a great sport to stay fit. The great thing about swimming is, if I have a really bad day, there’s a problem that arises, I always take it out in the pool. So every time I get out of the pool, it’s a brand new day.” When it’s suggested to Meagan that swimming is her escape, she readily agrees. But then she’s asked what word she would personally choose to describe it. “That’s a tough one . . . It’s kind of like my world. It’s like my life. It’s kind of like my haven, you know what I mean, and my sanctuary.” As for what it’s like to live with Prader-willi Syndrome, Meagan doesn’t hold back. “I’ll try to put it the best way I can. It kind of sucks to have it because I wish there was a cure or something, so I wouldn’t have to deal with this every day. But in some ways, like my mom said, I’ve inspired a lot of people. “Yes, I wish I would be able to eat a lot more. But you’ve got to deal with what you’ve got to deal with every day. Kind of what the saying is: God created you for a reason. And I kind of think they created me because I’m a very determined girl and I never quit, and I always inspire everyone around me.” Her brother Connor, 18, competing here in his first Olympic trials, never had to look far for motivation. “She was always an inspiration for me when I was a little kid,” he said. “I was just swimming for the fun of it and I’d always see how hard she works and she made teams. I thought ‘That’d be fun to do.’ So I decided to work as hard as she did and see what happens.” Meagan has had the same coach for 10 years: Jason Allen at the Go Kingfish swim club in Ottawa. He marvels at the job Merklinger and her husband Don Michie have done in raising their daughter. Michie works as a freelance carpenter, giving the family the flexibility they need to help take care of Meagan.
“The strength of that family is incredible,” said Allen. “They’re tough, they’re loving, but they have to be tough because of the disease — because if they’re not, they’re going to get into a lot of problems.”
When it comes to Meagan’s strong will, Allen says the apple doesn’t fall very far from the tree. “Being a woman in that (elite sport) environment and being structured like she has to be, Meg’s a bit of a spitting image of Anne,” he said. “They’re both very strong-headed, but they have to be in what they do.”
Merklinger, who took over for Alex Baumann at Own The Podium when he left for New Zealand recently, was an elite athlete in two sports: a national team swimmer who might have gone to the 1980 Moscow Olympics if not for the boycott, and a curler who twice led her team to the final at the Scott Tournament of Hearts.
While Merklinger has helped teach her daughter the value of hard work, Meagan has shown her mother the value of sport. “Meagan as an individual will never be able to live on her own,” said Merklinger. “Most people with her disorder will ultimately end up living in a group home. That’s why every day that she’s in this environment is such an accomplishment.
“That’s what sport does. It’s one thing to make it to an Olympic team or Paralympic team, but then to see what impact high-performance sport has on a person like Meagan, her life is so much fuller and richer because of the opportunities she’s had to swim. She’s so comfortable in her own skin. She gets up on the blocks and just wants to do her personal best.”