Taylor De Boer knows how quickly life can take a drastic turn.
A rising star in the volleyball world, De Boer was gearing up to play at the University of Illinois in 2023, after serving as captain for Team Canada’s U19 team in 2022.
But Taylor started having health problems in May 2023. First, she experienced sinus, ear and eye infections. After getting her wisdom teeth removed, they got infected. She went on antibiotics, but Taylor wasn’t getting any better. Something was clearly wrong.
After her medical team ordered several tests, Taylor, who was 17 at the time, was sent to OSF Children’s Hospital of Illinois in Peoria. There, it was discovered she had Anti-Neutrophil Cytoplasmic Antibody (ANCA) Vasculitis. ANCA is a rare autoimmune disease that can attack many systems, like the lungs, kidneys, joints and sinuses, all at the same time.
“We were very scared and worried,” says Lisa De Boer, Taylor’s mom. “It was a really difficult time because it’s a very challenging diagnosis.”
After a week of treatment at the OSF Children’s Hospital, Taylor was allowed to go home with her family. Unfortunately, the symptoms persisted, and she was hospitalized again.
“When I first got out of the hospital, I was having sinus issues and joint pain in my legs, struggling to walk in the beginning,” Taylor says. “In my lungs, I had gotten pneumonia at the time and my kidneys were slowly affected. I started getting plasma transfusions.” Her kidney function decreased to 30%. She was admitted to the Critical Care Unit – Taylor’s road to recovery was going to last far longer than first expected.
Taylor’s physician is Kelsey Grimes, DO, a third-year resident at OSF Children’s Hospital of Illinois. As a former athlete, she connected with Taylor’s desire to get back to her sport.
Dr. Grimes says it was an honor to care for Taylor. “The whole time she was very positive and did exactly what we recommended,” she says. “A lot of times on these journeys it becomes hard. Your spirit gets down, but she had family support. Her parents were there and they’re awesome!”
After spending a couple of weeks in the Critical Care Unit where Taylor received plasma infusions, her health greatly improved. Lisa, Taylor’s mother, says one of the positive turning points was frequent visits from the hospital’s therapy dogs.
“Taylor has always had dogs her whole life, and that was something that after being so isolated, it started to change her mood a little bit,” Lisa says.
In early August 2023, the medical care team decided Taylor was feeling good enough to return home. Now came another tough chapter of the journey – the recovery. While she was feeling better, Taylor was in no condition to return to volleyball full time. She returned to Champaign, Illinois, and went through extensive rehab while redshirting for the University of Illinois volleyball team.
“The different organs that were impacted because of this illness, you have to give them time to recover with that. That is sometimes hard to tell. Everyone recovers differently. You have specific medications you have to stay on to prevent infections. That can be a prolonged thing,” Dr. Grimes says. “Then you have the deconditioning that happens because of prolonged admission. She’s not doing the same exercise that she was doing prior, so you have to work your way back up from a physical and muscular standpoint.”
Taylor agrees. Looking back at her recovery, she says it wasn’t easy at all.
“Your body needs time to learn how to move again. I basically had to learn how to play volleyball again, which was a little ugly in the beginning,” says Taylor, laughing. “I’m at a point where I have a jump count I have to hit, to keep elevating the number of times I jump so I’m more comfortable in every practice setting. I’m working out with the team full time, practicing full time and am back in the swing of things which is nice.”
Dr. Grimes teamed up with Taylor’s coaching and training staff to ensure the recovery plan was at the right speed, and not going too fast.
Taylor has a new outlook on life. She wants to use her story to help others.
“I just want to be an advocate for those who feel like they can’t do that anymore or struggle to find their passion for it because they think they’re not allowed to do it,” she says.
And she’s doing just that. She now works with the Uplifting Athletes organization, giving encouragement to other athletes suffering from rare autoimmune diseases.
She returned to full training with the U of I team this year and is gearing up for the fall season now.
Her mom’s advice for loved ones going through similar situations is to be in the moment and lean on your support systems.
“I remember days where there were lots of tears, and days where she was overwhelmed. She talks about it a lot now, but trying not to be too toxically positive, knowing that it was a bad day. Letting the bad days be the bad days,” Lisa says. “That was hard as a parent because you want to take away some of the anxiety and stress and make things better, but you can’t always do that. It was a matter of sitting with her in her tough days and being present.”
Taylor and Lisa agree that the care team at OSF HealthCare was top notch, supporting her and her family the entire journey.
“Every nurse and doctor took their time, was really patient with me and understood that I didn’t really know what was going on,” Taylor says. “It was also a new setting because I was a 17-year-old kid, and everyone else on my floor was little babies. So, it was definitely a different experience, but everyone treated me really well and I was really lucky.”
With close monitoring, Taylor is ready for the upcoming season, and she hopes to return to Team Canada soon as well.
“We now celebrate the normal,” Lisa says.
To follow Taylor’s sports journey, the 2024 University of Illinois volleyball season can be found here.
***Story and Photo Courtesy of OSF HealthCare: Illinois Outside Hitter/Opposite Hitter Taylor de Boer (#5) during practice at Huff Hall in Champaign, IL. Photo By Kevin Snyder***
