Sometimes, if you look closely, you can spot the blue band on Frank Schwindel’s wrist.
For Schwindel, his Team Ryker wristband is a visual connection to the 7-year-old Chicago Cubs fan who calls the first baseman his best friend.
Schwindel’s bond with Ryker Colón began in January at a meet-and-greet event through Club 400, a nonprofit founded by a Cubs fan. It spawned a link between Schwindel and the Colón family.
Ryker is one of 17 children in the world with a JAG2 gene mutation. Doctors categorize his condition as a form of muscular dystrophy; however, the rare disease does not have a name. Ryker no longer can walk and uses a power wheelchair.
None of it stopped him from playing catch that night with Schwindel, who hopes wearing the Team Ryker wristband will bring awareness to the disease.
“Whatever I can do that brightens someone’s day,” Schwindel told the Tribune. “Being able to connect with people and give a kid like Ryker smiles and hope where you don’t give up and keep the faith. Anything can happen.”
After the Cubs’ April 22 game against the Pittsburgh Pirates, Schwindel shared a photo on his Instagram story of him wearing the blue Team Ryker wristband. He requested some be mailed to him, keeping one for himself while putting the rest on a table in the Cubs clubhouse for any of his teammates to grab. Reliever Scott Effross was among those to take one, displaying it on a shelf in his locker.
Schwindel continues to stay in touch with the Colóns and gets regular updates from Ryker’s father, Eddie. He gave the family his tickets to attend a Cubs game this summer.
“The worst part is not knowing,” Schwindel said. “It’s tough to see, and especially me being a dad now, you just want what’s best for your kids. And it’s got to be tough, seeing them struggle or not being able to do the things they want to do.
“I just want to help them out and just know that we’re thinking about them.”
Club 400
Stewart McVicar launched Club 400 in 2014 after spending four years building the ultimate Cubs fan dwelling in the tricked-out basement of his Lake in the Hills home.
The space features all the knickknacks and mementos a Cubs fan could dream of, ranging from a plethora of signed jerseys and baseballs to a neon-lit replica of the Wrigley Field marquee to a one-of-a-kind life-size bobblehead of Anthony Rizzo.
During the summer of 2020, McVicar hosted limited tours because of COVID-19 and asked Cubs fans to nominate someone deserving. Eddie Colón nominated Ryker and 10-year-old son Aramis, named after former Cubs third baseman Aramis Ramirez.
The Colóns were chosen and made the three-hour drive from their home in Muscatine, Iowa. At the time, Ryker still was walking and wore a helmet because he had been falling.
“They gave the boys the best tour ever,” Eddie said.
Three months after the visit, McVicar reached out to Eddie through Facebook to check in on the family and asked about Ryker and his backstory. They kept in touch online and through Club 400.
At one point, friends of Eddie in Muscatine reached out to McVicar because of his fundraising background and the medical costs associated with Ryker’s condition. It took months of persuading before Eddie agreed to let McVicar and Club 400 feature them.
On Sept. 10, Club 400 hosted a fundraiser for the Colóns with former Cubs pitcher Ryan Dempster as the special guest. The event raised $40,000, all of which went to the family.
“Kids are so resilient, they can teach us all a lesson of when we’re going through tough times to remember to smile and be thankful for what we have, and he has an amazing support system around him,” Dempster told the Tribune. “Here’s a kid who life has taken so much away from him with his challenges, and that’s OK. He doesn’t see them as challenges. He sees them as opportunities. And that’s pretty special. He’s fun to be around.”
Club 400 has raised $600,000 over the last eight years for numerous charitable causes with a goal to reach $1 million. Its most recent event on May 27 featured pitcher Marcus Stroman and partnered with his charity, HDMH Foundation, and The Lost Boyz, an organization that provides baseball and softball to youths in Chicago’s South Shore neighborhood.
“Ryker is one of the great things that came out of COVID,” McVicar said. “Not only do we help them a little bit — and we can’t always solve the problems — but easing the burdens are a good thing. It’s not me. It’s the community of the people that follow Club 400 that makes things happen.”
The Club 400 events and network help find connections to other resources, especially medical ones. It was through people in Club 400 that Eddie and his wife, Brandi, were able to get Ryker into Shriners Hospitals for Children in Chicago. Although Shriners wasn’t able to help with Ryker’s disease, the hospital reassured the Colóns they had been seeing the right people in the neurology field.
A Club 400 member also reached out to a chiropractor 90 minutes from Muscatine where the Colóns travel for Ryker once a week. They used to go three times a week but cut back because of Aramis’ travel baseball practice schedule.
“It’s a struggle for us to try to let anybody watch Ryker just because it’s a lot,” Eddie said. “People say, ‘You guys need some time away,’ but it’s not that easy because, yes, they’re not going to let anything happen to him. But to carry him from the kitchen, from the living room to the restroom, that’s a lot of work.”
The unknowns and forging ahead
Ever since Ryker was little, hospital visits were common.
Eddie recalls how, at birth, Ryker had a constant cough, one that still lingers today. Nobody could figure out what was causing the issue. Then in 2018, the Colóns realized something wasn’t right when 3-year-old Ryker frequently fell. He was fitted with a helmet.
Eddie and Brandi’s focus and questions shifted: Why was he losing mobility? Why was it hard for Ryker to keep his head up?
“Basically he’s been going to doctors his entire life,” Eddie said.
That has included three surgeries, including one on Ryker’s right ear in early May. While in the hospital, he watched a Cubs game with his dad while wearing a Team Ryker band. Ryker let the nurses know Schwindel had one on too, “and they thought that was so cool,” Eddie said.
Among the various doctor visits was a four-year span of trips to the University of Iowa Children’s Hospital, where the family did not gain any answers. For the last two years, the Colóns have taken Ryker to the Mayo Clinic in Minnesota, where they at least learned one notable insight into Ryker’s condition.
A muscle biopsy revealed the rarity of Ryker’s disease. The clinic kept some of Ryker’s muscle fat tissue and tests it every year because medical advancements are constantly changing. The most recent test revealed the variant in the JAG2 gene.
The Colóns were told researchers in Florida and the Netherlands keep files of the 17 children worldwide with the mutation and are trying to crossmatch data and information to identify any common links.
“The genetic doctor said some kids at birth were severe and they couldn’t walk at all and they need a lot of help, and then there are some that developed it in the teens,” Eddie said. “And then there’s some like Ryker that early on it started going that way.”
The Colóns have researched muscular dystrophy to gain insight into Ryker’s ailments. But despite doctors recommending he attend camps for kids with muscular dystrophy, Ryker does not qualify right now because his disease remains unnamed.
With Ryker unable to walk, the Colóns utilize a heavy-duty stroller at home to move him around. A chairlift gets Ryker upstairs to his bedroom.
When a Mayo Clinic geneticist initially discussed wheelchair transportation for Ryker, Eddie was very hesitant. He worried about the impact on Ryker at school, namely the attention it would attract from classmates and how they would treat him.
But having seen how Ryker is welcomed by Aramis’ friends — many of whom have siblings Ryker’s age who include him in everything — Eddie relaxed at the thought of Ryker using an electric wheelchair. It’s now Ryker’s source of movement at school.
“I know people are going to say stuff, but at school everybody wants to be around Ryker,” Eddie said. “Everybody loves him. I drop him at school and he gets get surrounded by, like, 12 kids.”
What comes next is unclear. The Colóns are hopeful that raising awareness of Ryker’s disease will help unearth more information, more understanding of his condition and, hopefully, even a cure. While they don’t promise Ryker he will walk again, his family does everything it can to give him a childhood like any other 7-year-old boy growing up in Muscatine, Iowa.
But how many of them can say they have a best friend on the Cubs?
