DANIELLE CAMPO-McLEOD

Paralympic Swimming Champion Discovers New Life

Story by Michael Seguin

Photography by The Hargreaves Studio

DANIELLE CAMPO-McLEOD’S parents realized something was different about her when she was still an infant.

“When I was 15 to 16 months old, my Mom started noticing that I was walking differently,” Danielle explains. “I wouldn’t just squat down to play with toys. Meanwhile, I have two older brothers who are both very active. So, she thought it must just be the difference between boys and girls. But, she noticed that when I did start walking, I wanted to be carried a lot. And we had a bedtime routine where we’d have a bath, we’d put our pajamas on and we’d walk to the stop sign a couple blocks away. My brothers would sprint. I would walk a couple steps and then ask to be picked up.”

Initially, Danielle’s parents assumed that she’d inherited her father’s flat feet.

“Mom took me to the doctor, expecting that we’d leave with some orthotics,” Danielle recalls. “Instead, the doctor referred us to a specialist.”

Danielle was diagnosed with muscular dystrophy when she was two.

“I had severe weakness in my legs,” Danielle states. “There was a lot of bullying in grade school. Running and jumping were difficult. I became active with Muscular Dystrophy Canada. They were such a great support system for us.” However, even with her diagnosis, Danielle still felt different.

“As I met other people with muscular dystrophy, I realized that I didn’t fit,” Danielle explains. “Muscular Dystrophy Canada’s logo is a puzzle piece. And I always felt like a different piece. I never fit in the puzzle. There are so many different types of neuromuscular disorders. But, I wasn’t progressing. I wasn’t getting worse.”

Despite everything, Danielle and her family took a positive approach to her diagnosis, and encouraged her to strengthen what muscles she could.

“I initially started swimming as a form of physiotherapy,” Danielle states. “I loved the water! There’s no limits in the water. It gave me a total sense of freedom. I loved being in the water and being able to play around and have so much fun.”

As a teenager, Danielle was approached by the Windsor Bulldogs, a differently abled sports league. From there, she went on to become a Paralympic Swimming champion. She swam in two Paralympic Games. In Sydney, Australia, where she won three gold medals and a silver medal. She later competed in Athens, Greece, where she won two bronze medals and another silver.

Ten years ago, Danielle wanted to learn more about where her condition came from and how it might impact the next generation of her family.

“About 10 years ago, I started seeing a new doctor in Hamilton,” Danielle recalls. “I started talking about genetic testing. My brother and his wife were at the stage where they were starting to think about kids. So, I wanted them to have answers about what our kids would inherit.”

Danielle now has a speaking career with Bespoken Bureau, discussing such topics as leadership, resiliency and bullying with a wide range of audiences.

For over a decade, Danielle would make an annual trip to Hamilton for another round of testing.

“We did different bloodwork,” Danielle states. “Different gene testing. They always came back with, ‘We found this, this and this, but not this, which would have been the missing link.’”

This June, after countless hours of testing, Danielle and her doctor made a breakthrough.

“Two months ago, my doctor called,” Danielle explains. “He said that he’d found the genes that he believed were causing my muscular weakness. And he followed that with, ‘And there’s treatment I can send you for it.’”

Danielle’s response was as eloquent as the situation demanded: “WHAT?” The medication arrived in the mail a couple of weeks later.

Now, at 35, after living with muscular dystrophy as long as she can remember, Danielle’s symptoms have all but evaporated.

“It’s still shocking to me,” Danielle admits. “I never lived my life expecting there would be treatment available.”

The medication caused Danielle to reevaluate how the neuromuscular disease impacted her life.

“I didn’t realize how much physical pain I was in,” Danielle states. “You don’t identify it. You just get up and go. I really thought I was living a full life. I’m so busy. I sit on a Board of Directors. I live a really crazy life. But after I started the treatment, it really opened up a part of my brain that I didn’t know existed. It really unlocked a lot of fears that I had. When my husband and I had kids, we had to have a conversation about what would happen if I wasn’t there. Could I give them the best years of me, and if something happens because of this muscular dystrophy and I’m not here, I want them to know joy.”

The pills, Danielle explains, started working instantly.

“It’s a whole new world!” Danielle exclaims. “It’s really exciting. But now I have new strength in my hands and legs. Before, I could never bend down and put one of my kids in the bathtub. I always had to hold onto something. It’s given me such a new sense of independence. I can do everything now! I can run alongside a tricycle while my crazy-active four-year-old is pedaling his heart out. I get to be a part of everything, now. I’m not watching from the sidelines. I played What Time is it Mr. Wolf? at the park last night for the first time.”

Most significantly, thanks to the medication, Danielle now gets to experience life free of pain.

“It’s crazy,” Danielle states. “I never realized how much pain I was living with. I thought everyone laid in bed at night with body aches! I thought everyone had muscle cramps and pain in your feet and back pain! I never imagined people didn’t do that.”

Over the last couple months, Danielle has been enjoying her family’s reaction to her dramatic turnaround.

“My husband isn’t taking the medication,” Danielle states. “He doesn’t have the internal feelings that I do. He and I were at our cottage. The ground was gravel, and on a slope. Normally, I would need to hold onto him. He held out his arm to support me. And I got to just hold his hand instead.”

However, even with the disease, Danielle seemed to live the equivalent of three lives. She’s launched a successful speaking career with Bespoken Bureau. She has spoken in front of a wide range of audiences about topics such as leadership, resiliency and bullying.

Danielle and business partner Sarah Westbury are launching their own business, Touchpoints, a coaching and consulting firm that focuses on personal and professional development.

“We’re going to be launching online very soon,” Danielle explains.

Danielle is also in the process of writing her autobiography.

“I have an amazing ghostwriter working for me,” Danielle states. “His name is Paul Hargreaves. We’ve been collaborating on my story. I hope that I can inspire people to live their best life. Life won't always be perfect but we can make it amazing.”

And while Danielle may still be the piece that doesn’t fit, she remains dedicated to her lifelong puzzle.

“Right now, my main thing is giving back to Windsor and Essex County,” Danielle stresses. “That’s my goal. I just want to say thank you to Windsor and Essex County and everyone who supported me. Twenty years later, people still come up to me in the grocery store and recognize me. I can never say thank you enough to our incredible city.”

WLM