Now 11, Desa is back on the dance floor in a specialized wheelchair and making tremendous progress toward using her legs again.
Desa’s story of determination started from the moment she woke up after one of her surgeries, asking whether or not she would miss dance practice. Desa immediately went to work at Shriners Children’s physical therapy sessions, where her dance teacher even came to her appointments to instruct her on various techniques. It was there that her teacher mentioned the possibility of a dance chair.
The Shriners Children’s team immediately started designing a specialized dancing wheelchair with a lower back piece, a lighter frame and an extra third wheel. Within a week, Shriners Children’s gave the innovative device to Desa. She is able to lean back further in her chair and move around the dance floor quickly.
“The dance chair Shriners Children’s built for us gave us such a feeling of hope,” Allyson, Desa’s mom, said. “After the accident, it was painful to think of her not dancing again and the uncertainty of it all made it very tough on us. But with the dance chair, it became possible for her to be on stage again, and we’re forever grateful to Shriners Children’s for that. There were so many tears from me and the other dance moms at her first performance after the accident. To see how far she’s come and what she can do now makes me very emotional.”
The dance chair Shriners Children’s built for us gave us such a feeling of hope.
Bethany Lipa, M.D., specializes in physical medicine and rehabilitation at Shriners Children’s Philadelphia, where she focuses on helping patients with traumatic injuries return to being independent and doing the everyday activities they love. Dr. Lipa said since the first day Desa walked into the building when she was 8, she’s always had a smile on her face and an intense work ethic when it comes to therapy.
“I have never worked with a child who has come into rehab and is so ready to start,” Dr. Lipa said. “I’ve never seen her unhappy, and it’s a unique experience to see a child go through so much and have such good spirits about it. Her SCI is incomplete, which means there is a good chance she’ll regain a lot of movement and function. She’s doing amazing in just a few years after her injury.”
From May to October, Desa attends weekly physical therapy sessions at Shriners Children’s. She is pushed to her limits, and can now take small steps and pedal a bike on her own. Although her steps might be wobbly and her pedaling slow, in just three years, Desa has made spectacular strides in regaining some movement back in her legs. For her, being back on the dance floor has been an extremely exciting part of her journey.
“When my friends saw my dancing wheelchair, they were shocked at how different it is compared to my regular chair,” Desa said. “I feel like I’ve improved so much as a dancer, and I’m moving around so freely on the floor. For anyone out there like me, it’s hard in the beginning because you’re not used to it. But I promise if you keep pushing and get through the frustrating moments, you will smooth it out. Once you get in the groove, it’s easy.”
Desa also participates in archery and has great support from her family, including her sister Lydia. Shriners Children’s Philadelphia, Chicago and Northern California offer world-renowned SCI care. Learn more here.
