20240229_VB_Practice_deBoer5_KS_0052
Taylor de Boer knows how quickly life can change.
A rising star in volleyball, de Boer was preparing to captain Canada's U-19 team in 2022 before playing for the University of Illinois in 2023.
But Taylor began having health problems in May 2023. First, she suffered sinus, ear, and eye infections. After having her wisdom teeth removed, they became infected. She took antibiotics, but Taylor's symptoms did not improve. Clearly something was wrong.
After the medical team ordered several tests, Taylor, who was 17 at the time, was sent to OSF Children's Hospital in Peoria, Illinois, where they discovered she had antineutrophil cytoplasmic antibody (ANCA) vasculitis, a rare autoimmune disease that can attack many organs simultaneously, including the lungs, kidneys, joints, and sinuses.
“We were very scared and worried,” Taylor's mother, Lisa De Boer, said. “It was a really difficult time because it was such a difficult diagnosis.”
After a week of treatment at OSF Children's, Taylor was allowed to return home with her family. Unfortunately, her symptoms continued and she was re-admitted to the hospital.
“When I first got out of the hospital, I had sinusitis and joint pain in my legs, and I had a hard time walking at first,” Taylor said. “In my lungs, I had pneumonia at the time, and it gradually affected my kidneys, so I started on plasma transfusions.” Her kidney function dropped to 30 percent. She was admitted to the intensive care unit. Taylor's road to recovery turned out to be much longer than initially expected.
Taylor's doctor, Dr. Kelsey Grimes, a third-year resident at OSF Children's Hospital in Illinois, is a former athlete who understood Taylor's desire to return to sports.
Dr. Grimes said it was a pleasure caring for Taylor. “She remained positive throughout and did everything we recommended,” she said. “There are hard times on any journey like this, and there are emotional lows, but she had the support of her family. Her parents were there for her and they're amazing!”
After spending several weeks in intensive care and receiving plasma infusions, Taylor's health has improved significantly – and his mother Lisa says frequent visits from the hospital's therapy dogs were one of the turning points.
“Taylor had had dogs all her life and living a lonely life started to have a bit of a mood change for her,” Lisa said.
In early August 2023, the medical team deemed Taylor well enough to return home, and another grueling journey of recovery began. Though feeling better, Taylor was not ready to return to full-time volleyball. She returned to Champaign, Illinois, where she underwent intensive rehabilitation while redshirting for the University of Illinois volleyball team.
“The various organs affected by the disease have to be given time to recover, which can be difficult to judge sometimes. Everyone recovers differently. She has to continue taking certain medications to prevent infection, which can be long-term,” says Dr. Grimes. “And the longer she stays in hospital the worse she gets. She's not doing the same exercise she used to, so she has to work on her recovery from a physical and muscular standpoint.”
Taylor agrees. Looking back on her recovery, she says it hasn't been easy.
“Your body needs time to relearn how to move. I had to basically relearn how to play volleyball, which was a little tough at first,” Taylor said with a laugh. “Now I'm just nailing my jumps, increasing the number of jumps and getting more comfortable on every practice field. It's good to be back in shape, training full time with the team and practicing full time.”
Dr. Grimes worked with Taylor's coaches and training staff to ensure his recovery plan was moving at the right pace, and not too fast.
Taylor has a new outlook on life and wants to use her experiences to help others.
“I just want to be a voice for people who feel like they can't do that anymore, or who are struggling to find their passion because they feel like they're not allowed to,” she says.
And that's exactly what she's doing: She now works with an organization called Uplifting Athletes, inspiring other athletes who suffer from rare autoimmune diseases.
She returned to full training with the University of Illinois team this year and is now preparing for the fall season.
Her mother's advice to loved ones in a similar situation is to live in the moment and rely on your support system.
“I remember the days when there were tears and when my daughter felt devastated – she talks about them a lot now – but even though I know it was a bad day, I try not to be too positive – I let a bad day be a bad day,” Lisa says. “As a parent, you want to take away any anxiety or stress and make the situation better, but that's not always possible. It was important to be there for my daughter when she was having a bad day.”
Taylor and Lisa agree that the care team at OSF Healthcare was the best, supporting her and her family throughout the entire treatment process.
“All of the nurses and doctors took their time and were really patient with me and understood that I didn't really understand what was going on,” Taylor said. “Also, I was a 17-year-old kid and everyone else on my floor was a baby, so it was a new environment, so it was definitely a different experience, but I was really lucky that everyone treated me really well.”
Taylor is currently under close supervision as he prepares for next season and hopes to return to the Canadian national team soon.
“We're celebrating the ordinary right now,” Lisa says.
To follow Taylor's athletic journey, tune in to the 2024 University of Illinois volleyball season here.
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