Playing for Elle: How Taylor Sandbothe is Honoring her Sister and Shining Light on Guillain-Barré Syndrome
Every time Taylor Sandbothe steps on the volleyball court, she knows it’s a privilege, and this fall in AU Pro Volleyball, she’s stepping on the court with a deeply personal purpose. She’s playing in support of the GBS/CIDP Foundation International in honor of her younger sister, Elle.
In 2021, while playing professionally in Germany, Elle was diagnosed with Guillain-Barré Syndrome, a rare inflammatory disorder that rapidly attacked her peripheral nervous system. The disease, which affects people across all demographics, took nearly everything from the young athlete in a matter of weeks.
“It essentially took her entire body from her, which was extremely scary,” Taylor recalled. “Her being overseas, first of all, and it being in the heat of COVID, there was really no way for us to get to her.”
Guillain-Barré Syndrome is characterized by rapid onset of numbness, weakness and often paralysis that ascends from the extremities toward the torso. The cause remains unknown, though roughly half of cases occur shortly after a viral or bacterial infection, and could come from something as common as the flu or food poisoning.
For Elle, the symptoms started with a static-like feeling in her hands and face. Within weeks, her central nervous system was shutting down.
“She lost the ability to walk. She lost the ability to pick up and throw things,” Taylor said. “It’s very common for people who are diagnosed with this. If it’s setting in rapidly without getting that first onset treatment, you could be ventilated because your body needs something to help you breathe.”
Elle was diagnosed within three weeks of her first symptoms and received blood protein infusions to help her body fight against its own immune system. But even with swift treatment, she spent weeks in inpatient and outpatient rehabilitation.
For Taylor, watching from across the ocean was gut wrenching.
“I felt so unbelievably at a loss,” she admitted. “I was like a wreck. I was a complete mess. I didn’t know what to do.”
The Sandbothe sisters’ careers have been intertwined since childhood. Growing up in a sports family started by two parents who were athletes at Missouri, competition was woven into their DNA. When Taylor went to Ohio State, Elle followed for her senior year. They even faced each other across the net when Elle played at Kansas State. It was a moment Taylor calls her best volleyball memory to this day.
Both sisters went on to play professionally overseas, with Taylor blazing the trail.
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“I’m always pushing her to advocate for herself,” Taylor said. “Especially being overseas, you’re the only person who’s really looking out for you in that sense.”
But when Elle fell ill in a country where she didn’t speak the language, during a pandemic when travel was nearly impossible, Taylor couldn’t be the protective older sister she’d always been. Instead, she had to trust in the medical team in Germany, and Elle’s boyfriend Ruben, who had yet to meet the Sandbothe family.
“He was able to be there for us and did a lot of things for us that we couldn’t do,” Taylor said. “Being a voice for her, being in a country where she doesn’t speak the language…that’s a luxury that all of us seriously take for granted.”
Throughout the attack on her health, Elle refused to be defeated. Her nurses would write words like “power,” “hope,” and “love” on her transfusion vials. The family’s mantra became “healing always.”
“You would never have known what she was going through based off how she carried herself through all of this, because she didn’t have a choice but to be brave,” Taylor said. “She didn’t know what the future held at that point either. This was just her being herself.”
Elle had one goal above all others: getting back on the volleyball court.
“All she cared about was being a volleyball player again, even in those moments,” Taylor recalled. “Being healthy is just not enough. She has to be back where she was because she wants this still so bad.”
The experience fundamentally changed Taylor’s perspective on her own career.
“When she was going through this, it changed a lot of the way that I view what I do and why I do it, and specifically my health and how important it is, and how much you take it for granted,” she said.
Elle made a full recovery and returned to playing professionally overseas. But the lack of information about the disease, particularly for athletes, inspired Taylor to raise awareness.
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Last summer, Taylor helped Elle write and submit her story to the GBS Foundation’s patient portal, where survivors share their experiences.
“It was very eye opening to see her experience, and a lot of that stuff I wasn’t really aware of,” Taylor said. “Having that community, I think, was so important for her.”
At the end of each season, Athletes Unlimited makes a grant equal to 100% of the athlete’s end-of-season win bonus to the non-profit of the athlete’s choice. When Taylor signed on to play with AU this fall, the choice was simple.
“There’s just not a lot of information geared towards athletes that have it,” Taylor explained. “Being a voice for my sister, being a voice for this community, and really just raising awareness around how these kinds of things affect athletes specifically…I think it’s really incredible.”
Elle is adamant that this stage of her career is no longer her comeback. She’s back and better than ever, and wants to share her story with anyone else who’s suffered from GBS. Taylor is determined to celebrate that determination from the AU Pro Volleyball court.
“She wants to have this connection with everyone,” Taylor said. “For her to be healthy and to be in this space, I think it’s something that should really be celebrated. I want to shout it from the rooftops, honestly.”
Now, as Taylor competes in Madison, Wis. and Omaha, Neb. – close enough to her Lee’s Summit, Missouri home for family to attend, she carries her sister’s story with her every time she steps on the court. And with a new contract signed with the San Diego Mojo for the upcoming Major League Volleyball season, Taylor is entering the next chapter of her career with a renewed perspective.
“The coolest thing about me is my sister,” Taylor said. “She has been able to emulate such grace and gratitude throughout her entire diagnosis that I felt so unbelievably compelled. I’m like, ‘You’ve got to share your story’…She was just phenomenal through the entire process. And so is the [GBS] foundation.”
For Taylor Sandbothe, every moment on the court is a gift. And this season, she’s making sure that gift honors Elle, who fought to get back on the court herself.
Siera Jones is the digital media reporter at Athletes Unlimited. You can follow her on Instagram and X @sieraajones.
