Like true Ninjas, Canton family fighting health crisis with positivity

There are two ways to handle life-altering adversity: 1) by sulking and drowning in self-pity; or 2) the inspiring fashion Canton’s Miller family has dealt with Nathan Miller’s Duchenne Muscular Dystrophy diagnosis.

After the shock wore off in the wake of hearing the devastating news from doctors in February of 2015 when Nathan was 5, the Millers — parents Ryan and Andrea; and brothers Nick and Nathan — sat down and formulated a plan.

“We basically said, ‘We’re not going to let this diagnosis define us’,” Ryan Miller recounted. “If Nate wants to do something, we’re going to make sure he can do it, regardless of the obstacles that might pop up.”

No obstacles too high

Oh, there have been obstacles along the way — but none too daunting to alter the Millers’ positivity-coated journey.

For instance, when Nate was in second grade, he was one of just 16 boys in the United States approved for a safe trial that included 83 weekly enzyme infusions (and accompanying testing and physical therapy) at Lurie Children’s Hospital in Chicago.

“Ryan and I both had full-time corporate office jobs at the time,” Andrea Miller said. “And the infusions were on Thursday mornings, so we’d both have to miss a day of work every week and Nate would miss a day of school every week.

“But that’s when we decided, hey, everything is figure-out-able.”

Everything is ‘figure-out-able’

The Miller parents alternated weeks making the nine-hour round-trip trek to Chicago.

“We’d get a rental car at the same place near I-94 and U.S. 23 and stay in the same hotel in Chicago,” Ryan said. “After a while, the guys at the car-rental place, would just say, ‘Hi, how you guys doing?’ and throw us the keys. They even upgraded the cars we were renting.”

The Millers chuckled at the memory.

In May, Ryan escorted Nate on Pioneer Middle School’s eighth-grade trip to New York City — far from an ideal place for a 13-year-old attempting to get around in a motorized wheelchair.

But they figured it out.

“When we needed help lifting the chair over a curb, somebody was always there to lend us a hand,” Ryan said. “And when we saw the play ‘Wicked’ on Broadway, there were a lot of stairs in the theater, so a tour guide helped us find elevators so Nate could experience the same things his classmates experienced.”

The birth of Nathan’s Ninjas

Following the lead provided by another metro-Detroit family whose now-19-year-old son Joseph was diagnosed with Duchenne several years ago, the Millers established Nathan’s Ninjas — a 501(c)(3) non-profit organization that helps fund Nate’s medical needs that aren’t covered by insurance and the needs of other Detroit-area families whose children were recently diagnosed with Duchenne.

“Not long after the original diagnosis when Nate was 5, Andrea’s sister bought Nate a Ninja Turtle pajama set with a mask and everything,” Ryan said. “He tried it on, struck a pose and said something about Raphael (one of the Turtles) never giving up.”

A short time later, Andrea was discussing running-related fundraising ideas with a group of friends.

“They actually started talking about Nathan’s Ninjas and it stuck,” Andrea said. “I loved how it went along with his outfit and the words he said.”

The Millers have organized eight fund-raising 5K walk/runs, which draw up to 400 participants, and an annual autumn golf outing.

“The 5K is pretty amazing because we get people out who have never walked or run that far before,” Ryan said. “A good friend of mine, who recently lost over 100 pounds, finished the entire race this year for the first time. He said the only way he was able to do it was because he was inspired by Nate.”

Attitude is everything

While the Duchenne Muscular Dystrophy has gradually robbed Nate of his ability to walk, it has not impacted the 43 muscles that enable him to smile.

During a recent hour-long conversation in his family’s south-Canton home, his face lit up when topics like University of Michigan athletics, video games and Canton High School sports popped up.

“Nate’s attitude through this entire journey has been awesome,” Andrea said. “He inspires us daily.”

When Andrea and Ryan were asked where they find the strength to navigate the toughest days of Nathan’s battle, Andrea looked directly at Ryan and said: “From each other.”

“We’ve learned that a lot of couples don’t make it through these situations; a lot of marriages end in divorce,” she said. “I’m not sure how people do it without a partner to lean on.”

When discussing the past eight years, the Millers shared several uplifting anecdotes.

This past spring, Canton’s girls soccer team dedicated a fundraising game against Plymouth to Nate by decorating their faces with temporary Ninja Turtle tattoos, wearing bright-green Ninja Turtle-themed headbands and posing with Nate in a heartwarming post-game photo.

Feel-good gesture

Another gesture that makes one’s spine tingle with joy involves Pioneer Middle School teacher James Buhro, who was set to retire following the 2021-22 school year.

“Last summer, Mr. Buhro told the Pioneer principal that he wanted to delay his retirement one year so he could be Nate’s para-pro,” Ryan said. “He said he wanted Nate’s eighth-grade year to be a great one.”

The Millers said Plymouth-Canton Community Schools have been terrific at cooperating with Nate’s special needs.

“Not long after Nate was diagnosed, we heard nightmarish stories from families impacted by Duchenne about how unsupportive a lot of communities and school districts were with their children,” Ryan said. “But the school district here has been amazing.

“The principal at Workman Elementary when Nate was there — Jim Burt — told us whatever we need, let him know. And Pioneer Middle School didn’t have a wheelchair-accessible bathroom, so they redesigned one for Nate.”

Nate finished his middle school academic career at Pioneer with a sterling 4.0 grade-point average, one of just 40-something eighth-graders to do so.

College hoops connection

And Nate has become a cherished member of the Wayne State University men’s basketball team thanks to an organization called Team Impact, which matches children facing serious illnesses with college sports teams.

“They treat Nate like he’s one of the team,” Ryan said of the  Wayne State’s hoops team. “He gets to attend closed practices, he’s on the court during pre-game introductions, giving all the players high-fives, and he’s invited in the locker room after wins.

“They even had a signing day for him, putting his picture and name up on the big screen and making a hype video for him. Those guys have been awesome.”

Nate has bonded with a group of Nick’s travel-soccer buddies, all of whom attend Salem High School (Nick was the only one of the group to draw Canton).

“When Salem’s soccer team made a run to the final four last year, they made sure to include Nate in post-game team photos whenever they earned a trophy,” Ryan said. “Pretty cool stuff.”

Hoping for a breakthrough

The weekly infusions Nate receives help give him strength and maintain heart and lung capacity.

Promising news for Duchenne patients is emerging as a gene therapy trial was recently approved for 3- to 5-year-olds that has proven to repair the broken DNA strands that cause the disease.

In the meantime, the Millers will continue to fight, smile and live life to the fullest.

Because, after all, that’s what true Ninjas do.

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