The daunting journey of Claire Stern: “Mom, am I going to die?”

At this time last year, Claire Stern was a Division 1 college basketball player, a freshman at North Dakota State University with a very bright future. Six months later, on the 2nd of June, the 2024 graduate of Maple Grove High School was hospitalized in an intensive care unit after a series of cardiac arrests nearly ended her life. It would be weeks before there was an accurate diagnosis, before she'd get an implantable device, before anyone knew what the future might look like.

Claire's mother Sheila was by her side 24 hours a day at the hospital. An endless parade of specialists poked and prodded in search of answers. After everyone else had departed for the day, Claire and Sheila tried to make sense of it all. “I think it was on the third night,” Sheila said, “that Claire looked at me and said, ‘Mom, am I going to die?' What do you say? I said, ‘I don't think so.'”

Fortunately, Sheila's hopeful words came true. Today, Claire is back at NDSU. Her playing career is over but she's still on scholarship, almost always smiling. The Sterns have now launched the RareDNA Foundation, a 501(c)(3) non-profit organization dedicated to helping medical professionals and families deal with rare genetic heart mutations like PPA2 which often lead to mitochondrial disorders like hers.

This Saturday in Fargo the Bison will host a fundraiser for the Foundation during their game with Oral Roberts University. Next Monday, Feb. 2, Maple Grove High School will do the same. Fans will have the opportunity to meet Claire, learn more about the work of the Foundation, and support the cause.

“I had not been feeling great.”

The Sterns' terrifying journey began innocently enough. “I hadn't been feeling great the past couple of nights,” Claire recalled. “I was kind of sick to my stomach in the morning. That night I was watching a movie in the basement with my boyfriend. All of a sudden I passed out, I went unconscious. Jackson thought I was joking, but he said I got really stiff and started shaking… He was like, ‘You have to go tell your parents.'”

Sheila responded as any mother would – she took her daughter to the emergency room in Maple Grove. While the pair was waiting to be seen in the ER, Claire passed out again. “I just started screaming,” Sheila explained. “‘Help me! Help me! An ER nurse comes flying out from the back. He looked at me and said, ‘This is not a seizure. This is a cardiac event.'”

That night Claire was transferred to the University of Minnesota Medical Center where doctors began furiously searching for answers. A strong D1 athlete in the prime of her career. A healthy 19-year-old with no known heart issues. How could it be?

One of the first people Sheila reached out to was Dre Jefferson. Claire is close with her longtime Minnesota Suns AAU coach, who is also the head coach at Minnetonka High School. “It was surreal honestly,” Jefferson said of his initial reaction. “She had come to my AAU practice just a couple days before that to compete with my kids. I was shook up. When you hear ‘cardiac event' my fear was that I wouldn't see her again. She's like a family member to me. I left work and had a hard time getting through the day not knowing if she'd be OK or not. We could just pray and hope.”

My reaction was the same. I've known Claire since she was in middle school. We scout and write about a ton of kids, of course. It's inevitable that friendships will form with some players and their families. Claire is special to me. We were living in the same part of Maple Grove. We'd run into each other at the HyVee store. Her dad Mike would bring over his latest creation from the backyard grill. When I received Mike's text about Claire's condition, I was stunned.

Only family could visit when Claire was in the ICU. Jefferson was there. “I was a little shaky,” he said, “because two minutes before we got there one of the specialists came to give a testing update and she did not have good news. At that point I just gave Claire a big hug.”

Weeks of uncertainty

Prior to the medical emergency, Claire had been putting in serious work in preparation for a return to summer workouts in Fargo. Predictably, she was worried about what Bisons' coach Jory Collins would say if she couldn't get back to campus, if she wasn't at her best. Sheila texted Coach Collins to let him know. “I told him, ‘We don't know what's happening but I'm in living hell right now,'” she said. “He got emotional on the phone and said, ‘Whatever we can do, please let me know.”

Collins flew to Minneapolis the next day. “He tried to break the tension with some humor at first,” Sheila said, “but I remember very quickly he said don't worry about getting back to campus. This is way bigger than basketball.” Collins had already spoken to NDSU athletic administration about Claire's situation and their support was rock solid.

What followed was weeks of uncertainty. Specialists of all descriptions were involved in the quest for answers. There were scans and biopsies and an endless array of medical trial and error. And prayers. Lots of prayers. Eventually the diagnosis came: A rare heart mutation, one that often goes undetected and is frequently discovered only after death.

“There's only a handful of people living with it,” Sheila explained. “We know of four younger adults between the ages of 16 and 21 in the U.S. There's somebody in Europe who is in her mid-20s. There's one other person who is significantly older, and she had multiple heart transplants before they figured out what she had.”

In the beginning

Claire's basketball journey began in China of all places where Mike Stern was on an extended work assignment. Claire's first sporting interest in kindergarten was soccer, but she soon discovered that in an expat community full of Europeans her skillset was already behind the curve. “I pretty much went home crying every time,” she said with a laugh.

Although they didn't have a driveway, the Sterns managed to get a hoop, albeit one with half the backboard missing. Mike volunteered to coach a team that included one other girl who didn't want to be there. “None of them spoke English,” Claire said. “Our team was called the Nuggets – like the Denver Nuggets. For the longest time I thought we were the Chicken Nuggets!””

Claire was in the 3rd grade when the family returned to Minnesota and she started in travel basketball. It became obvious rather quickly that she had potential. The first time I saw her play I knew immediately that she was a D1 prospect. In the fall of 2020 , Claire was a Freshman 50 selection for the Class of 2024 and soon rose to the top 10. The highlight of her career came in the 2024 State Tournament Class 4A quarterfinals when the 6'0 forward scored the winning basket at the buzzer against Lakeville North.

Last winter Claire's college career got off to a solid start. She made her debut against Drake University and went on to appear in 32 games, averaging 14 minutes off the bench. She was right on track for a much bigger role as a sophomore. It was not meant to be.

After a few days in the ICU it became clear that Stern's basketball career was over. “The doctor basically sat down and said, ‘You're not going to be able to play anymore,” Claire explained. “And then the doctor who did my implant said, “Every year you try to play basketball you're going to lose 10 years off your life. That's when it kind of clicked.”

NDSU has been incredibly supportive throughout the process. When Claire returned to Fargo in the fall she was named a student assistant coach. “I still get to be part of the team and travel,” she said. “I'm there to provide support for my teammates, making sure that they're all doing OK and the energy level stays up.”

As for her health, Claire has adapted to the new realities. “I feel good,” she said. “I did cardiac rehab for five months. I have been running a little. The most I've run is about a mile. For how I am right now, that's really good. I'm doing a little lifting with the team using my little dumbbells.”

How you can help

Sheila and Claire have poured a ton of energy into the formation of the RareDNA Foundation. They are working with a researcher at the University of Minnesota and are developing plans for an outreach program that will educate medical professionals on how to better recognize patients who may have rare heart mutations. The focus is on improving diagnosis, supporting families, and ultimately helping to save lives.

“We'll start with cardiologists and then primary care doctors,” Sheila said. “They need to get the blinders off, especially if it's an athlete. If they're complaining that they don't feel right, that something is off, physicians need to know what to look for.”

That takes money, of course.

The Maple Grove game on Monday is against Jefferson's Minnetonka team. It's a significant Lake Conference matchup but the opportunity for fans to support the Foundation is much more important. “We're really excited about the game,” Claire said. “I'm looking forward to seeing all the Crimson fans again. It's going to be a great night.”

An inspiration

Claire's journey has not been easy, but she is making a huge impact on so many people. Her smile is contagious. Her positive energy spills over onto everyone around her.

“Claire has been an inspiration this year,” Coach Collins said in his message to fans. “A lot of times in coaching we talk about adversity, about overcoming adversity, and how you handle situations. Most of the time that's an injury or a poor performance. When it becomes a life-or-death situation, overcoming that with the attitude that she has has been inspiring to her coaches and teammates.”

Jefferson agrees. “Claire has incredible parents, an amazing family and support system,” he said. “She's built to handle hard things. She has a strong faith and she's a special human being. I know it's not easy, but she has taught us all a lesson in what true strength and resilience looks like. We sometimes forget that basketball is a tool for real life and she's a shining example of that.”

For more information on how you can help please visit rarednafoundation.org