Danielle Campo displays her medals at the Town of LaSalle Civic Centre near Windsor, ON. (Credit: cocophoto)
The potential of those who live with neuromuscular disorders is unlimited, so long as the rest of us enable rather than disable. Danielle Campo is a 34-year-old mother of three (with a fourth on the way) who lives in Windsor, ON. She has lived with congenital fibre type disproportion, a rare form of muscular dystrophy, all her life, and, while it keeps bringing new challenges every day, she has never let it hold her back. As a world-class swimmer, Danielle has set multiple world records, won gold medals at the 2000 Paralympics in Sydney, Australia, and generally helped to redefine competitive athletics in Canada, especially for those with disabilities or health issues.
“Swimming was my freedom,” Danielle says. “On land, I always had to think four steps ahead. How steep were the stairs? Were there railings? In the water, though, there were no restrictions. In my first event, the 400 freestyle, I broke the world record by 30 seconds. I still remember getting out of the pool after that swim and all the coaches from the other teams just having their mouths hanging open. But I had no idea. I was just like, ‘Was that a good time?’ For me it wasn’t about the times, it was about the feeling I had in the water. I always swam just to swim.”
Finding purpose after the podium
This is a woman who was told she would never walk, would never be able to bear children, and would have a truncated life defined entirely by disability. “I was diagnosed at two years old, back in 1987,” Danielle says. “What happens when you’re diagnosed with muscular dystrophy is that you start to put everything in place for when it would turn really bad. You know it’s going to progress, you just don’t know how quickly. Back then, it wasn’t about living your best life, like it is now. It was about setting you up so that you had everything you needed for when it got really bad.”
There’s little doubt, however, that Danielle is living her best life. From the 2000 Paralympics in Sydney to the 2002 Commonwealth Games in England to the 2004 Paralympics in Greece, she has never once slowed down. She’s been awarded both the Queen Elizabeth II Golden and Diamond Jubilee Medals and has been made a member of the Order of Ontario.
Through all this, Danielle remains humble, reflective, and grateful. “It’s about being your best, not necessarily being the best,” she says. “For me, being my best means cultivating a strong and amazing support system. I’m lucky that I have a support system that lets me keep going at the pace I want to go at.”
Now retired from international athletic competition, Danielle has found a new career and passion in helping build that same support system for others with conditions like hers. In her current role as a director at Muscular Dystrophy Canada, she works to help those with neuromuscular disorders find their own personal best.
“There are over 150 different types of muscular dystrophy and every year with ongoing research we’re discovering new types,” Danielle says. “The title of muscular dystrophy is an umbrella, but it doesn’t write the story of what your journey will look like. Every person’s muscular dystrophy story is different.”
Better outcomes through early diagnosis
Many of those on their own muscular dystrophy journeys are beginning to see new hope where there was very little before, and not just through inspiring stories like Danielle’s. New therapies are coming to market, or are in varying stages of research and clinical trial, for several forms of muscular dystrophy, including Pompe disease, Duchenne muscular dystrophy (DMD), and spinal muscular atrophy (SMA).
Click here to learn more about the potential symptoms of neuromuscular disease.
“Genetic testing is also evolving quite quickly as a diagnostic tool,” says Brad Crittenden, Executive Director of the Canadian Association of Pompe. ” The quicker we can diagnose with confidence, the better the outcomes. As research continues to be done, we’re going to find more treatments for many rare diseases including other types of muscular dystrophy. It’s all very exciting.”
“Pompe disease is one of many neuromuscular disorders under Muscular Dystrophy Canada’s umbrella,” says Crittenden. “A Pompe patient who is untreated will get progressively weaker. General prognosis is death by respiratory failure, but that’s without correct diagnosis and treatment.”
The progressive nature of these diseases underscores the importance of sustained disease awareness, something that Danielle feels strongly about. She now works tirelessly to advocate for Canadians with muscular dystrophy, using her magnetic personality and impressive athletic credentials to empower, educate, and unite.
Danielle’s story, and the stories of those like her, remind us of the unlimited potential of anyone who chooses to commit themselves to overcoming adversity with the drive, determination, and focus of a champion.
Danielle photographed in LaSalle, ON. (Credit: cocophoto)
If you know someone who has been impacted by a neuromuscular disorder or suspects they may have a neuromuscular disorder, please contact Muscular Dystrophy Canada at 1-800-567-2873. They have service specialists across the country who are ready to help with information, resources and support. For more information visit: www.muscle.ca/we-can-help.
Connect with us:Facebook: @MuscularDystrophyCATwitter: @MD_Canada
A community-based initiative supported by Sanofi Genzyme.