High-School Track Athlete with Myotonic Dystrophy Finds His Stride Helping Others

Kade’s athleticism and spirit hasn’t been dampened by his diagnosis

Almost exactly one year ago, in the spring of 2016, Kade McCann learned he had myotonic dystrophy. For this young athlete, the diagnosis stopped him in his tracks.

“It was spring of my junior year of high school. I had taken an exhaustive course load and was mentally spent. On top of that, I was looking forward to my spring track season as I had ongoing injuries and had not competed in either cross-country or indoor track that year,” recalls Kade. “So, I was completely knocked over when I received my diagnosis. I went through an intense period of anger, fear and denial.”

While Kade struggled to accept his diagnosis, he was proactive about taking care of his health, spending many days at Boston Children’s Hospital meeting with specialists and undergoing more tests. At first, his own condition was all he could focus on.

“Every week there were new obstacles for me to face and information to process,” Kade says. “But after a while, I started to pay attention to the kids at the hospital.”

What he saw not only helped him come to terms with his own diagnosis but also spurred him to action.

“Most of my fellow patients were younger than me, but their conditions were far worse. As I would sit and wait for my appointment, something inside me said that I needed to make a difference in the lives of these kids. I asked myself, ‘What could I do? I’m just a kid. I can’t help these kids. I can’t even help myself.'”

Around this time, Kade began to consider what he might focus on for his Senior Capstone Project, a year-long deep dive into a specific topic that would be part of his graduation requirements from Whitinsville Christian School. Kade didn’t have to look too far for a subject area that interested him.

“I saw my Capstone Project as the perfect opportunity to increase awareness of muscular dystrophy and, in particular, myotonic dystrophy by getting my school community and greater regional community to rally behind a fundraiser and get involved in a tangible way,” Kade says.

The benefactor of his fundraising efforts? Well, that’s a funny story.

“Connecting with MDA was the last thing I wanted to do when I was first diagnosed,” Kade admits. “‘To me, affiliating with MDA would mean that I had accepted the diagnosis and I wasn’t ready to do that.”

However, as plans for his project progressed, he recalled an encounter with an MDA representative who reached out to ask if he needed support or wanted to learn more about the organization.

“I worked up the courage to contact her and just like that, the dots were connected for me and I realized that there was something I could do,” Kade says. “I could hold a fundraiser for the MDA not to help myself, but to help all those other kids who are suffering far worse than me.”

For this track and field student athlete, planning a run/walk fundraiser was the natural next step.

“I chose this because it hit a nerve with me. I have seen many children at Boston Children’s Hospital that are unable to walk and I realize that one day that could be me. I wanted to do a fundraiser that would allow participants to not just donate money, but to have a call to action by walking or running for those people that cannot walk or run for themselves,” Kade says. “I am encouraging people that as they take each step they think about the millions of people who are affected by neuromuscular disease and give thanks for their own good health.”

Despite the familiar activity, Kade was still in uncharted territory when it came to fundraising. Despite this, he committed himself to a $5,000 goal and set about achieving it by constructing outlines; hiring vendors to help produce videos, t-shirts and websites; and mapping out timelines.

Kade works to keep himself strong in the gym

To collect donations, Kade used the MDA Your Way online fundraising platform, which allows individuals to organize their own fundraisers for MDA. Participants have used the tool to collect donations for MDA in lieu of wedding gifts or anniversary presents and organize cross-country bike treks or hikes across Europe. Kade’s fundraiser is among the top five most successful campaigns.

Once the fundraising mechanism was in place, the next order of business was to share his story, something that Kade had been reluctant to do. He started with an important audience: his school community.

“I had allowed myself many months of privately living with my story and sharing it one on one. Each of those interactions built my confidence and helped me to frame how I wanted to share it with others,” he says. “So, by the time the day came for the school assembly for me to share my testimony, I had a really good sense of what I should say and how I should say it. I think it was shocking and scary for many of the students to hear my story, but in time they have come to have a better understanding that while I may have this disease, I am still the same person.”

From there, Kade branched out to share his story with his church and the larger public. It was intimidating at first, but Kade learned a lot about himself and others in the process.

“You have to have confidence in yourself that you can raise money and also trust in the hearts of people to care about your cause,” he says. “As long as I kept my focus on my vision and message, I found that people were more than willing to help and get involved.”

His planning, passion and persistence paid off: to date, Kade has raised $5,900 for MDA. Far from basking in that achievement, Kade focuses on the potential for the money.

“Of course, I am very grateful that I reached my financial goal, but I am just as grateful that people have taken the time to read about my story and to understand what the symptoms of early-onset neuromuscular disease look like,” he says. “Early intervention could literally save a life and raising awareness of the signs and symptoms was really my primary focus. Organizing a fundraiser was the means to reaching that goal.”

Kade is looking forward to seeing his efforts come to fruition this Saturday, April 22 (registration is still open, and Kade is accepting donations through the end of May). But his involvement with MDA is something he is committed to long-term. In the fall, he will join the Honors Program at UMASS Lowell and major in biomedical engineering.

Kade’s involvement with MDA has expanded to including visiting retailers who sell MDA Shamrocks

“The MDA of Massachusetts actually has a chapter on the campus, and I plan to get involved in that chapter and see what opportunities there are for me to continue spreading awareness about neuromuscular disease,” Kade says. “Also, as a member of the Commonwealth Honors Program at UMASS Lowell, I am required to do a Senior Capstone Project. Ironic, huh?”

Whatever form that Capstone Project takes, it is clear that MDA has a strong supporter in Kade. He recommends that anyone facing a diagnosis like his seek out the organization.

“When someone is diagnosed, the first thing we all want is information and the MDA has plenty of it to share. Second, if a patient or family need some form of assistance, the MDA has many programs that can help. Lastly, the MDA is made up of a community of individuals who want to serve and to help ease pain and suffering,” Kade says. “Who wouldn’t want to be part of that kind of community?”

Follow Kade’s example and create your own fundraiser for MDA!