For the Love of Devin: Josh Argall Races to Find a Cure for His Son — and All MDA Families

Many kids look up to their dads. But rarer is the father who looks up to his kids.

That describes the relationship between Josh Argall and his son, Devin. When Josh speaks about Devin, you can hear respect, love and pride shining through his words. Hailing from Wisconsin, Josh is a loyally dedicated father of three and passionate advocate for all families in the MDA community. His dedication to raising awareness for MDA stems from his deep love for Devin. “I love him with every ounce of my being,” he says, and it is from this love that Josh’s advocacy journey began.

Josh and Devin are quite the pair. Together they have raised more than $45,000 for MDA and show no signs of slowing down.

Devin was diagnosed with Duchenne muscular dystrophy (DMD), a progressive and fatal muscle-debilitating disease, at age 3. Josh, who had separated from Devin’s mother, Dawn Kaufmann (also a big supporter of MDA), was a single father at the time. Hearing the diagnosis left him “so shook up everything seemed as if were not real.” But as a single parent, Josh resolved to stay strong and keep positive for Devin’s well-being.

They encountered MDA early in their journey. When Devin was first diagnosed, Josh says that MDA was there at the Children’s Hospital in Milwaukee to offer support.

“They met with us,” he recalls. “I remember getting the guy’s card and remember him saying that he was sorry and they would be there to help us. They followed up with us and brought us in to learn about MDA and all of the services they had to offer.”

Although Josh was touched by the support that day, he says it took him about two years to fully accept their situation and decide to “turn it around and make the best of it.”

As he got to know MDA, Josh quickly realized how important it was to have a community around, especially as a family with a child newly diagnosed with a neuromuscular disease. Meeting and forming relationships with other families is “extremely beneficial,” Josh explains, because it gives parents the chance to learn from others who have been through the experience.

Josh was so moved by his “experience of love” from MDA, he committed to helping out in whatever ways he could.

“I can’t discover the new medicine, I can’t provide healthcare, but I can contribute to the mission in my own way, so that’s what I decided to do, ” he says. “I like to do things for MDA that reflect my appreciation for what they do and show them how much they mean to me and my family. There isn’t anything I wouldn’t do for MDA. Knowing how these parents feel and these children feel, that’s what keeps me going.”

Like father, like son: synchronized dabbing on the course of the Chicago Spring Half Marathon in May 2017.

Josh describes Devin as “absolutely incredible, so loving, and quick to make people smile.” He says Devin is an adventurer and loves riding his ATV, but those hobbies come after his commitment to MDA and Team Momentum, MDA’s long distance running program of which Devin and Josh have been longtime teammates.

Team Momentum plays a huge role in the Argalls’ lives today, but Josh’s initial decision to run a marathon to support MDA started mostly on a whim. When Team Momentum first launched in 2013, Josh said he received an email that offered entries into the Chicago Marathon and signed up within fifteen minutes of reading the email. It was, as he says, his “call to action.” Given how many miles he’s logged since that fateful email, it’s almost impossible to believe that he wasn’t even a fan of running at the time. But the purpose and mission of the team have driven and encouraged him to this day.

Josh says he will never not be a part of Team Momentum because, for as much as he has given, it has given back so much to him as well, like better health and meeting families he has grown to love. “I wish everyone would give it a shot,” he says. “The hardest thing about it is filling out the form and committing to the team.” Josh would know: he was the first official member of Team Momentum. He is proud of the claim. “I was there from the beginning and I will be there until the end,” he says.

Ready to relay!

Josh runs many races for Team Momentum, oftentimes with Devin. Recently, with a team of 12, they ran a 188-mile relay from Madison, Wisconsin to Chicago together. Devin was an integral part of the team and was assigned three legs of the race, which took more than 32 hours in total, like every other runner. For Devin’s miles Josh pushed Devin in their racing chair, and, as Josh explains, “those miles are all his.”

“I added steering and a brake to his chair that he operates,” Josh explains. “I often push him with my eyes closed holding him responsible for navigating everything in front of us. He may not be able to move us with his legs, but he’s the fuel that powers me and keeps us moving forward toward the finish line.”

Running together is an important bond Josh shares with Devin. “I pretty much don’t sign up for a race unless Devin can sign up as well,” he says. The exception: the Chicago Marathon. This year, Devin will still be a month shy of his 16th birthday, the cutoff age to participate in the race, but Josh says as soon as he is old enough, they will be running the Chicago Marathon together. Until then, Devin will continue to cheer his dad on.

Their racing schedule is all part of Josh’ commitment to “try and live each day to its fullest and be positive about everything.” Josh is excited for Devin and the many adventures coming his way in the future. First up is driver’s education this summer. It’s a milestone Josh wasn’t sure Devin would reach. “People told us at 10 years old he would be in a wheelchair and 20 was about how long he’s was going to live. Now here we are, just a few months away from Devin turning 16 years old and he can walk as far as he wants and I don’t see anything stopping him anytime soon.”

Devin’s odds-defying health can be attributed partially to a medicine called Exondys 51, which he received as a participant in the drug’s clinical trial phase. Now approved by the FDA, it is the first disease-modifying drug for DMD available for boys like Devin.

Josh with Genevieve, Benny and Devin at the Green Bay Muscle Walk.

Watching Devin flourish is one of Josh’s proudest achievements. Proud father to Benny, 4, and Genevieve, 2, Josh says his parenting philosophy involves a lot of understanding and a lot of mentorship. “I try to guide them in the way that’s best and hope that they follow my example for the most part,” he says. So far, at least with Devin, it’s working. “I am so proud of who he’s become. I see what he’s doing in life and the choices that he’s making and I’m so proud of him.”

Devin is proud of his father as well. He is always there to greet him with a hug at the end of the race and has even gotten the chance to hand a finisher medal to his father himself. Josh is aware Devin is proud of him and how he is “committed to this cause, not just for him, but for all families MDA serves.” In fact, their work for MDA has grown so far beyond themselves. Josh and Devin created Devin Strong, a nonprofit organization to promote awareness and raise money for MDA research. Through it, they are able to assist in fundraising and apply for grants. The reason is as simple as it is bighearted: “There are so many diseases people suffer from, and I want to be able to help everybody.”

As the Wisconsin State Ambassador, Devin is involved with all things MDA: Shamrocks, Fill the Boot, Muscle Team events and everything in between. Here, Josh and Devin represent at the Harley-Davidson Black-N-Blue Ball in Milwaukee.

Josh credits the MDA for being “our greatest support” and says it has helped him become the person he is, as a father and man, today. He is grateful for the recognition he’s received but says he doesn’t do anything beyond what flows naturally from the fierce love he has for his son.

He hopes that his dedication to Devin is the rule rather than the exception. “My wish is that all parents love their children and do everything they can for their children and live for their children, the way that I think I do. Our kids deserve the best from us as parents, so I hope that in some way, this story might help some other parents look at their lives and consider ways that they may be able to give more of themselves to their children, more attention, more love,” he says. “That’s really what matters.”

 

Josh and Devin are fundraising for their 2018 races. Help them cross the finish line!