Archdeacon: For Ironman and ‘Little Joy Boy,’ strength is more than muscle

They did the grueling 140.6 mile race together.

The Ironman and the Little Joy Boy – one provided the arms and legs; the other, the fortitude and inspiration.

That was never more evident at last Sunday’s Ironman Tulsa competition than when Brett Faro, the Cedarville University soccer coach, said he heard “the coolest thing” as he was running the marathon portion of the event through the Oklahoma city’s downtown:

“Someone shouted: ‘Strength Is More Than Muscle!’”

He’d heard it a couple of other times earlier, including when he was biking the 112-mile portion of the race through the foothills of the Ozarks.

Faro had the phrase written in big, white letters on the back of his black triathlon suit, right above the URL for the non-profit foundation: fritzandfriendsdmd.org

When he’s not in the heat of competition, Faro said people have seen the inspirational phrase and the Fritz reference and sometimes have asked what it all meant.

And that’s when they heard the story that made last Sunday’s effort as heart-tugging as it was herculean.

Little Joy Boy – as Sarah Krieger calls her son – is Fritz Krieger, a towheaded, five-year-old with a big beautiful smile and an “ugly” (again Sarah’s word) and unforgiving disease.

He has Duchenne muscular dystrophy (DMD), a rare, progressive disease that almost always occurs in boys and usually claims their lives by their late teens to mid-twenties.

Duchenne’s is often referred to as a childhood form of ALS. It eventually affects all the voluntary muscles and, in the later stages, includes the heart and the breathing muscles.

There is no cure. It is always fatal.

While Fritz lives in Mesa, Arizona with his parents and three siblings – Hans, Otto, Ingrid and soon another sister, since Sarah is scheduled to give birth in six days – he is treated at Nationwide Children’s Hospital in Columbus.

During those Ohio doctor’s visits, he and his family stay with Faro, his wife Shelley, the communications and events coordinator for the Xenia-based Athletes in Acton, and their two-year-old son Lincoln at their home in Xenia.

Shelley and Sarah were co-captains of the Concordia University soccer team in Nebraska a dozen years ago and have remained close friends. That connection initially helped the Kriegers meet the Cedarville soccer team and once the players got to know Fritz and his story, they embraced him.

His parents have spoken to team twice in the past few years and the Yellow Jackets have played two fundraiser games to aid the little boy and the DMD research effort.

And that tells you plenty about Cedarville soccer under Faro’s direction.

Since becoming the head coach in 2013, he has guided the Yellow Jackets to a 93-39-23 record and led them to three Great Midwest Athletic Conference titles and two NCAA Tournament bids. He’s been named the league’s coach of the year three times.

But the record and awards only tell part of the story.

“We want to pursue the highest level of excellence on the field we can, but if it’s just about soccer it can be kind of hollow,” Faro said.

“One of the things I try to do in our program is open the players’ eyes in different ways to things outside of their world. These are four of the most transformative years of your life. It’s when you figure out who you are going to be. What you are going to do. What you stand for and care about.

“As a coach, you have an incredible platform and can speak into that. We want our program to be one of gratitude.

“The challenge is: ‘How can we make this about more than just athletic achievement? How can we make it about others?’ And part of it was how can we raise awareness for Fritz and his family and what they are trying to do?”

Once they got the devastating diagnosis the Kriegers began the Fritz & Friends foundation that, as its mission statement says, hopes to raise awareness about DMD, fund life-saving research and teach and share about true strength.

That’s when – thanks in part to the efforts of their friends who have lifted them in so many ways – they came up with the motto: “Strength Is More Than Muscle.”

Not only has Faro gotten to know Fritz, but he now has a son of his own and that prompted him to wear the motto prominently on the back of his triathlon suit, while, on the legs, he has illustrations of the missing chromosomes in Fritz’s DNA that are the root cause of the disease.

“It’s a clip art form, something that takes science and tries to simplify it into art,” Sarah said. “Hopefully, people will look at it and think, ‘There’s got to be some meaning there’ and maybe they’ll ask questions.”

Faro, meanwhile, was quizzing himself when he first flirted with the idea of competing in a 140.6 mile triathlon, something he’d never done before.

Although he’d run marathons and half marathons, he was not a strong swimmer and didn’t know it he could propel himself over 2.4 miles of open water.

“Ironman had always been on the Bucket List for me,” the 34-year-old coach said. “But it’s always been ‘What can my body really do?’

“It was always one of those things right on the edge of insanity.”

And when he finally made the plunge, he soon realized “Strength Is More Than Muscle” wasn’t just some catchy saying on the shirt:

“That motto became a reality. It really hit home as I navigated the Ironman journey.

“There were training days where I hadn’t wanted to get out of bed, where I didn’t want to work out. There were times when I was cold or tired or I wanted to stop. Times when I’d rather have been with my family. But I found that message I’d shared with others was now resonating in my own life.

“Whether Fritz and his family knew it or not, they were strengthening me on my journey.”

And last Sunday, fully fortified by thoughts of a joyful five-year-old, Faro placed 248th of 1,709 competitors, turning in his best times ever in the swim, bike and run to finish in 11 hours, 7 minutes and 53 seconds.

‘Strength in kindness’

When Fritz was just 10 months old, Sarah said she said her husband Bryant noticed he was reacting differently than his two older brothers had at the same age:

“We thought maybe he just had a food allergy, but after lots of bloodwork and testing we came to this word we had never heard before.

“That was the Duchenne diagnosis.”

It was February of 2017 and the more they found out about the disease – how it attacks the leg muscles first, then the abdomen and arms and finally the heart – the more it left them reeling.

“Grief is a really interesting beast in a lot of ways and the initial feelings were very dark, very heavy,” Sarah admitted. “There was lots of crying as we tried to figure out how we’d move forward from there.

“We definitely went through the phase thinking, ‘Well, this is the end. Fritz’s muscles are going to restrict him from being strong and playing sports like other kids and doing all the things we dreamed he would do.’

“But then our community and friends came around to support us, whether it was through a heartfelt conversation, a hot meal or just a hug. They lifted us and we started to feel this weird strength.

“And that made us think: ‘Maybe there is more to this idea of strength. Fritz can be strong in a lot of other ways. He can still have a life. It will be different, but it still can be great and lived fully and have lots of experiences.’

“We came to realize he still can play soccer, but it just might be from a power wheelchair. And that’s OK. Our perspective has shifted. As people, as parents, we now see life through a new lens and it gives so much power and value to little situations that matter.

“I don’t ask how many touchdowns the kids scored or how many goals they had – all the things that make the book at the end of the game. I’d rather my kid was a good sport that day, that he was willing to help someone up when they fell.

“There is strength in kindness. They can be strong when they share their toys and pick up trash lying on the ground.”

And that’s how they came up with the motto that defines their lives, their foundation and especially Fritz, who Sarah said may be “the most social of our kids. Since he was little, he’s just known how to make anything a fun experience and a good time. That’s why we’ve always called him Little Joy Boy.”

Shelley has nothing but admiration for the way her old teammate and her family have handled the situation:

“I wouldn’t wish this on anybody, but they’ve been incredible in terms of the things they’ve accomplished and the lives they’ve touched. Sarah talks to other moms going through this. They’ve gotten down in the trenches with those families and the nonprofits and businesses they’re involved in are helping people.”

Along with the Fritz & Friends Foundation – (to find out more, donate or buy merchandise, visit fritzandfriendsdmd.org) – the Kriegers are partnered with another foundation, Cure Rare Disease.

It’s a biotech, non-profit out of Boston that helps get customized drugs for children with rare diseases, especially ones like Fritz who are ineligible for current trials and need something now to save their lives.

The Kriegers have partnered with Sarah’s sister and her brother-in-law – who is a barber – to open Fritz’s Barbershop in Mesa. It not only honors Fritz and spreads awareness about the disease, but it gives a free haircut to any boy with DMD, as well as his caregivers and family.

Like Sarah said, there is strength in kindness.

‘Incredible’ Ironman

In the height of the COVID pandemic, colleges sent their students, teachers and coaches home and canceled or postponed their sports seasons.

By last May, the Faro family had retreated to Nebraska where Shelley had grown up.

“I hadn’t done anything in almost nine months and we were joking that I needed to get working out again,” Brett admitted.

He said his wife “kind of rolled her eyes” at that.

“I’ve known him for over 10 years and I’d never seen him take such a long hiatus,” she said.

“The next week I went for a run – maybe three or four miles – and I was terrible,” he said. “I was slow and got winded and I had to stop and walk. We called it my mid-life crisis.

“I came home, took the ice cream out of the freezer and threw it in the trash. I said, ‘I’m getting fit!’

“And a couple of weeks later, I told her I was going to try the Ironman this year.”

He immersed himself in training while also coaching his Cedarville team – whose 2020 fall schedule was reduced and moved to this spring – to a 7-2-1 record.

In preparation for Tulsa, he did a 70.3 mile, half-triathlon in Arizona last October.

Last Sunday, as Shelley and Lincoln found vantage points to watch him in Tulsa, the Kriegers were pulling for him out in Mesa and got regular updates from Shelley.

“To be honest, I’m so impressed with Brett doing that,” Sarah said. “I didn’t need to know a time or anything. There’s just the fact he was putting his body through that. It’s mind-blowing really. And the fact that he did it in a way that wasn’t just for himself – but called attention to Fritz and the other boys with Duchenne – is just incredible.”

Except for sore quads and blisters on his feet, Faro said he feels fine.

He’s back in shape now and already has signed up to compete in a 70.3 mile triathlon in Florida in December. He said he hopes to do another 140-miler again, this one with even better times, and one day he wants to run the Boston Marathon.

And one more thing is back in his life.

There’s ice cream – chocolate chip cookie dough – back in the Faro freezer.

“At least, this week there is,” he said with a quiet laugh and the realization he may need that special kind of strength to remove it once again.

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