EAST LANSING — Sam Schulz has endured a lot of tough news during his visits to Cincinnati Children’s Hospital. Not quite like this, though.
“They basically told me that if there’s anything I want to do, that we need to go ahead and do it, because they’re not really sure how much time I have left,” Sam said.
As he and his mother sat at dinner after leaving the hospital in early July, she asked him, “Is there anything you really want to do that you’ve never gotten to do?”
His answer: “I want to go to East Lansing.”
He had been a fan of the Michigan State basketball team for more than a decade — ever since a direct message on Instagram to former MSU guard Tum Tum Nairn turned into a friendship with Nairn and then with Spartan coach Tom Izzo, and then with other players through the years, including now Jeremy Fears Jr.
Sam had been in the Spartans’ locker room after games at Indiana and the Big Ten tournament in Indianapolis, both closer drives to his family’s home in Newburgh, Indiana, near Evansville, than the trek to East Lansing, which is difficult for him to make. He watches every MSU game. But he’d never been on campus.
That was among his first thoughts when the doctor told him that he was running out of time. The feeding tube and PICC line had stopped working in January and he’d declined sharply since. There wasn’t much more doctors could do.
Sam suffers from recessive dystrophic epidermolysis bullosa, one of the most severe forms of EB, also known as butterfly disease, a genetic disorder that causes his skin to become fragile and blister and tear. It can cause difficulty swallowing and breathing, and leave one’s feet and hands damaged beyond use. Some people with EB can live a long life. Sam is doing his best to live a full one.
On July 27, a week shy of his 22nd birthday, Sam finally made it to East Lansing. Sam’s father, Pat, had called MSU men’s basketball communications director Mex Carey earlier in July, hoping he and his wife would be able drive Sam to MSU to watch a practice. Once Izzo got word, plans changed. Izzo arranged for a plane to fly them to Lansing and put them in the Graduate Hotel in East Lansing.
On July 28, Sam and his dad, his mother Lori and younger brother Simon sat at one end of the court in MSU’s practice facility, taking in a full-go MSU practice. Sam was as happy as he can be right now.
“I can sit here and watch this all day,” Sam said. “I love breaking it down, watching practice, see how it’s run, all that kind of stuff.”
It was the highlight of a couple days beyond anything he expected on his visit.
“I think he’s loved it,” Pat said. “Unfortunately, normally he comes to something like this and he just sort of soaks it up and he’s the life of the show. Sam has always been super outgoing, and I think right now he just feels so bad. I think deep down he’s just really enjoyed it, but his body’s just wearing out. He’s starting to see what’s in front of him. It’s starting to hit him.”
A message to Tum Tum led Sam to be a Spartan fan
Sam wasn’t initially an MSU fan. But his friend, Blake Anderson, was. Blake, who later starred at Evansville’s Memorial High School (where Sam also attended), grew up going to MSU basketball camps and, while he and Sam were watching an MSU game one day, Sam bet Blake that if he direct messaged Tum Tum Nairn, Nairn would answer.
“I’m thinking there’s no way he actually does,” Sam said. “The game had just ended, and he responded back within five minutes. It was insane. And we started texting back and forth and hit it off.”
Nairn then got Sam tickets to MSU’s games at Indiana every year until Nairn graduated, where Sam met MSU’s coaches and other players.
“The rest is history,” he said.
Sam and his family began attending every MSU game at Indiana and the Big Ten tournament when it was in Indianapolis. Once after a game, Sam asked Izzo if he considered playing a different defense than the one he had employed. Izzo, not known to appreciate such suggestions postgame, replied, “Well, I didn’t think about that.”
Sam’s wit, while not on full display last week, is still there. When Izzo told Sam about the Magic Johnson statue outside Breslin Center and what it takes to get a statue on campus, Sam quipped, “Well, I’ve beaten death five times.”
It wasn’t Sam’s first interaction with Magic, either. He met the real Magic Johnson at an Ohio Valley Conference basketball tournament in Evansville in 2019, when Magic, then an executive with the Los Angeles Lakers, flew in to see Ja Morant play. Sam, who could still walk short distances then, made his way down the arena steps and finagled his way past a security guard to talk to Magic.
Sam has talked his way into the Atlanta Braves’ clubhouse, and formed friendships with the likes of the New York Knicks’ OG Anunoby, who sent him the pair of shoes Sam was wearing at MSU. He’s become close with Ole Miss coach Chris Beard and, several years ago, was brought in to meet Kentucky’s team by then-coach John Calipari. He’s been interviewed on ESPN and gave an impromptu pep talk to Wisconsin’s Johnny Davis immediately after a rough outing in the Big Ten tournament.
“I think he makes people stop and think, like this is a gift,” Lori said. “What they’re getting to do every day, their bodies, their health, and I think it helps them a little bit just to be reminded of that. You look at Sam and you think, ‘I can work a little harder. I don’t have it that bad. I know their own siblings, like Simon and Sadie, just feel like, ‘OK, I can dig a little deeper.’
“I just know that Sam was put here for a special reason to reach people, to connect with people,” Lori continued. “Since he’s been little, he can connect with people of all ages, not just athletes, but just all people, and that’s just a gift he has.”
Explained Sam: “My saying has always been, ‘What’s the worst that can happen? They say no or they don’t respond. So shoot your shot.’ And it’s got me pretty far. I’ve been blessed.”
Blessed. It’s a heckuva way to look at it when you don’t know if you’re going to live to see your 22nd birthday, a few days away. He did. There was a big party for him back home a week after his trip to East Lansing.
“It’s just so humbling,” Izzo said. “He was sitting there eating lunch with our guys (during his visit), and everybody was laughing and joking. It’s hard for him to laugh and joke, but he was so, so, so good. His mother said, ‘It’s just fun to see him around people that are laughing. Jud (Heathcote) once told me that my impact here should be bigger than basketball. Maybe I’m working on that in the twilight of a mediocre career.”
‘Why I get up every day and keep fighting’
It was a “one-in-a-million” chance that Lori and Pat would meet and carry the same gene for epidermolysis bullosa. Even after their oldest daughter Sophie, now 25, was born with it, the odds were their other kids would be born healthy. Two of their children were, Sadie, 23, and Simon, 19.
“Sam came out perfect,” Pat said. “We thought, ‘Oh my gosh, he’s healthy.’ The hospital room erupted in joy, but I noticed right away that the lining of his mouth was not there, and so then I knew immediately.”
Sophie had been far worse off at birth and throughout childhood, though she’s hung in there physically better than Sam in her early adult years.
Lori sees all of it. She’s their caretaker, “a saint,” Sam said. She makes the three-plus-hour drives to Cincinnati for countless hospital visits and endures the most difficult conversations, like the one early last month with Sam.
“This is an awful disease,” Lori said. “Like 80% of their body is an open wound at all times. Watching them in pain is very hard for me, and that’s always been hard, and I can’t ever do anything to fix that. So I’ve always tried to provide any little joy or — what can we do, one thing a day just to spark something happy or a smile, whether it’s a little thing or what can we do for someone else that will make you feel good.”
“His mom, she refuses to give up,” Pat said, “as does Sam. They’re fighting like crazy.”
But also with the understanding that a trip to East Lansing to see MSU play couldn’t wait for a game in November.
“I don’t think I’ve missed a Michigan State basketball game in 10 years,” Lori said. “We watch them all, and then sometimes Sam, he thinks the lucky spot is when I’m sitting at the kitchen bar (in our home), and he’s like, “Mom, get back in the kitchen! We’re going on a run!’ He’s real superstitious.”
Izzo had been hoping Sam could visit during the season over the last few years. But it never was quite possible. Now it had to happen.
“All my people chimed in (to make it happen),” Izzo said, and to make the visit as memorable as it could be, from former basketball student manager Kieran O’Niel, Carey and GM Garrett Briningstool, all the way up to MSU President Kevin Guskiewicz, who met up with Sam and Izzo and Co. at dinner at the Graduate’s rooftop restaurant that Monday night and presented Sam with a Spartan Will Award.
Sam’s visit included a stopover at the MSU football facilities, where he met coach Pat Fitzgerald and was given a jersey with his name on it. He got to see some players he’s gotten to know a little. Fears heard he was coming and they had texted back and forth.
“I mean it’s definitely not always easy, but having experiences like this, having friends like Coach Izzo and Garrett, people like the staff at Michigan State, I mean, I’ll be honest, they’re one of the big reasons why I get up every day and keep fighting,” Sam said.
After Sam and his family headed home, Izzo drove to Grand Haven to meet 17 family members at his beach house before they headed up to the U.P. to celebrate his late mother’s life.
“It made me appreciate and realize how lucky I am that I have kids that are healthy and grandkids,” Izzo said. “It seems like I did something nice for him, or we did. But the truth of the matter is, he did a lot more for us, and I mean that. That’s not humility. That’s not. That’s the truth.”
Contact Graham Couch at gcouch@lsj.com. Follow him on X @Graham_Couch and BlueSky @GrahamCouch.
This article originally appeared on Lansing State Journal: Sam Schulz’s last wish: To visit MSU’s basketball team in East Lansing
Reporting by Graham Couch, Lansing State Journal / Lansing State Journal
USA TODAY Network via Reuters Connect
By Graham Couch, Lansing State Journal | USA TODAY Network
