The bright lights of the stage illuminated RaeAnne, a 34-year-old Shriners Children’s Chicago patient alumna from central Illinois. The crowd's roar echoed around her as she was crowned the new Ms. Wheelchair USA.
Her journey to this moment began long before the stage lights and the glitz of the competition. Through her years of amazing care at Shriners Children’s, she found strength and purpose to make a difference for others facing disabilities and be the best version of herself.
When she was 10 months old, RaeAnne was diagnosed with Guillan-Barre, a rare neurological disorder in which a person’s immune system attacks parts of their own nervous system. Despite initial assessments and treatment, RaeAnne’s health did not improve as anticipated, prompting her family to seek a second opinion at Shriners Children’s Chicago.
The care team diagnosed her with transverse myelitis, a neurological disorder where inflammation damages the spinal cord. This can lead to symptoms like weakness, numbness or even paralysis. At the time, this made her the youngest child at Shriners Children's Chicago, at just 3, to receive the diagnosis.
RaeAnne became a patient in the specialized spinal cord injury (SCI) rehabilitation program at Shriners Children’s Chicago, one of the first children’s hospitals in the nation to focus on pediatric spinal cord injuries. There, she underwent therapy and medical care from a specialized pediatric rehabilitation team. By the age of 4, she regained movement and feeling, but due to previous damage to the spinal cord myelin, she continued to experience overall body weakness and limited muscle growth. As a result, RaeAnne started using a power chair for mobility.
RaeAnne underwent extensive rehabilitation, physical therapy, and occupational therapy to enhance movement and help her maximize her independence. When she was 11, RaeAnne also underwent a spinal fusion for scoliosis, a curvature of the spine more common in children with SCI.
Along with therapy, she also received psychosocial support, which RaeAnne said was an essential part of dealing with the challenges brought on by her diagnosis for both RaeAnne and her parents, Bob and Sandy. RaeAnne credits part of her success to the powerful personal connections she had with that supportive team. Sara Klaas, MSW, CCM, C-ASWCM, was RaeAnne’s social worker and director for the SCI program at the time.
“Though the illness shaped her childhood, it never defined her. RaeAnne grew up with a spirit of resilience and a determination to live without limits. Her journey from a young girl overcoming adversity to becoming Ms. Wheelchair USA is a testament to the strength of her character,” Sara said.
Now a social worker herself, RaeAnne holds a master’s degree in social work from the University of Illinois and works as a research assistant at Vanderbilt University in Nashville, Tennessee. But it’s not just her academic and professional achievements that define her – RaeAnne has spent much of her life advocating for individuals with disabilities.
“People are born to be advocates, but you also must learn how to be one. During my time as a patient at Shriner’s Children’s Chicago, they taught me just that,” RaeAnne said.
Her advocacy work has spanned a wide range of projects aimed at increasing accessibility for people with disabilities. One of those projects is inclusive playgrounds in Illinois, ensuring that children and parents with disabilities have a place where they can all play together without barriers. RaeAnne recalls the first inclusive playground she was able to enjoy, which was at Shriners Children’s Chicago in the patient backyard.
“I still remember the first time I went up the ramp, and I just sighed, and I was like, ‘Oh, so this is what it feels like to be up here,’ you know, because I never got to experience that,” RaeAnne said.
That moment was a turning point, marking the start of a new chapter in RaeAnne's life, filled with even greater accomplishments. RaeAnne was not only crowned Ms. Wheelchair USA, but she also received the title of Miss Congeniality and the prestigious Dr. Georgi Hudson-Smith Quest for Knowledge award, recognizing her outstanding dedication to education and advocacy. For RaeAnne, this moment brought her back to a promise she made to herself when she was 11 years old.
“I promised myself I was going to be an advocate for future generations of individuals with disabilities. I wanted to make sure it was in a better place, as all of the advocates at Shriners Children’s Chicago and beyond my care there did for me,” RaeAnne said. Her journey to Ms. Wheelchair USA was a journey of strength, determination and purpose. RaeAnne plans to use her year as Ms. Wheelchair USA not just to raise awareness, but to make lasting change for individuals with disabilities.
