Danielle Campo McLeod lived 35 years of her life thinking she had muscular dystrophy and the endless pain that came with it. And then, last year, a medical breakthrough revealed her misdiagnosis, and Danielle was informed that she not only has a neuromuscular disorder that presents like muscular dystrophy, but also that there was a treatment.
For most of her life, Danielle would have told you that she didn’t live with a glass ceiling over her. As she slowly transitions into the able-bodied world thanks to her new medications, she’s realized that wasn’t true—that instead, all her life, people had had lower expectations of her.
“I didn’t think people saw the disability; I assumed people just saw ‘Danielle’ when I walked into the room. It’s been unique to see that there are higher expectations put on from the outside on what I can deliver,” she explains. “I’d always put a high level of expectation on myself, but many people before didn’t feel they could. It comes down to a comfort level of still critiquing and challenging someone, even if they have a disability.” This transition has motivated her to keep fighting to make sure that when things are labeled accessible for people with disabilities, that they’re not set with those invisible ceilings.
Danielle often describes MD as a joy stealer; the muscle fatigue would take away moments of joy that she didn’t expect it to. At both her high school and university graduations, there was no railing, so she needed help walking across the stage just to get her diploma. When she was pregnant with her children, she had to face that her body was not doing what she needed it to do. She lived with chronic pain while she was cooking dinner for her family, but pushed through because “it would be worth it.”
In the water, everything changed
Throughout her life, the only place MD couldn’t touch her was when she was in the water.
“On land, there were so many things I couldn’t do that my friends could; you saw those limitations in front of you. But once we got in the water, it didn’t matter. This is where I could do what I wanted to do.” Her comfort in the water is what led the now-retired champion to undertake competitive swimming.
Danielle comes from a very sports-oriented and competitive family and tried at first to follow in her older brothers’ footsteps through hockey, but says after scoring on her own net, she knew it wasn’t for her. It felt good to have something of her own, a field where she could beat her brothers. After she out-swam both of them, the two would bet their OHL friends $20 that “their sister could beat them in the pool.” Danielle’s still waiting for her cut of that prize money, but she’ll settle for the shattered world records and medals.
Danielle’s life was very different from the one her parents had imagined for her but watching her bursting drive for swimming gave them hope. They went the distance to support this dream; they drove to Chatham before a 5 a.m. practices and travelled around the world for her, because at every doctor’s appointment they’d hear another positive message: “These muscles are stronger than we expected.” And those words are enough motivation for any parent.
Danielle didn’t recognize the magnitude of her life until she retired from swimming: that not everyone gets to experience opening ceremonies or the Paralympics. She was 13 when she went to her first international meet, and 15 when she attended the Paralympics; this was just part of her life and after-school activities. Despite winning gold and breaking world records in Australia, she says that to this day her favourite races were those in Athens in 2004. By then, the world had caught up and the competition knew of Danielle’s strengths. “Those races didn’t end in gold, but I left everything I had in the pool. I raced for those bronze and silver medals.”
A new plan was taking shape
By 2006, Danielle was tired of dedicating every part of her life to swimming, and even though she thought she might get back into the pool at some point, she didn’t. Life had other plans as she began to enter the world of social work.
The field first piqued her interest when she performed a keynote speech at the Children’s Aid Society’s AGM, after coming home from the 2000 Paralympics. After achieving so much success in her young life, Danielle wanted to give back her winnings; she vowed to CAS’s executive director that she would come back to work for them. This sparked a love for working with people and led Danielle to embark on a tour around Ontario elementary and secondary schools to share her story. Social work just made sense, and so once she received her degree, she went back for that job at CAS and they hired her to start a career in child welfare.
Now, after years in the field, Danielle has found a new way to connect with people through her new diagnosis.
A new sense of hope
When Danielle was given this life-changing medication last year, it strengthened her muscles by 18 percent. She began experiencing a life without pain for the first time. Though it was “only 18 percent” in the doctor’s eyes, Danielle looked at them and said, “To you it’s only 18 percent but to me, it’s being able to put my youngest child in the bathtub. You all did that. I want you to know that you changed my life forever.”
In the last year, Danielle has begun walking her youngest to school in the snow without fear of falling or slipping on ice—they even had a snowball fight on their way to school. These little moments have brought Danielle a new sense of gratitude, and the opportunity to teach others how they can enjoy pausing and being present in the moment.
“Don’t get me wrong, I’ve got those days too,” she explains seeing other parents rush their kids to school. “But I was just able to think, wow, you have no idea that you’re just walking your kids to school because that’s what you’ve done every day.”
She’s also excited to experience another pregnancy with this new, pain-free body. Due to give birth in August 2021, Danielle is going through a pregnancy where she’s not living in fear. “I didn’t realize that with my other two I lived every moment thinking, what if this body can’t do it? Now it’s not like that. This body is going to do it. It feels like such a gift to be able to say that.”
Danielle says the world must look at her and her family and think they’re nuts. They’ll have five kids total and are a “travelling circus” who need a “small, ugly European bus” to fit them all, but says her home is wild, fun, and full of life and that’s what she loves about it.
Her husband Dennis is her best friend and biggest supporter in life, joy, and dreaming. Whenever Danielle has a new goal in mind, Dennis is there to come up with a plan of action to make it happen. Touchpoints, a recent dream-turned-business of Danielle’s, is a product of that “make it happen” attitude.
Setting an action plan
Danielle explains Touchpoints as life coaching meets practical body work. “In the clinical world, we feel like we can do everything, but how do you take that piece of paper and turn it into real life?” She and her partner Sarah Westbury, who is a certified health coach and manual therapist, are putting together webinars to help people implement goals through the power of pause or breathing techniques that actually work. Touchpoints brings Danielle’s passion for life and joy together with teaching others to “put the how into action!”
“The main thing is I’m setting dreams, getting to be a mom and a great partner. I feel like I can carry the weight of having a young, busy family, and be that equal partner.”
Danielle is so grateful that this re-diagnosis happened at the age of 35, because she gets to experience so much life in this new body. And, she gets to reclaim her joy.