October is National Spina Bifida Awareness Month
Patient Jessie excels with help from Shriners Children's Florida
Dancer, book lover, pop music enthusiast, animal admirer and daydreamer; these are all ways to describe Patient Ambassador Jessica, aka “Jessie,” who has been coming to Shriners Children's Florida since 2006. She was born with spina bifida, scoliosis, bilateral hip dysplasia and clubfoot; all of which she has received support and care for at our outpatient facility.
Children born with spina bifida have an incomplete closing of the backbone and membranes surrounding the spinal cord. This complex condition ranges in its effects, but may include leg weakness or paralysis, clubfoot or spinal abnormalities. Spina bifida is a lifelong condition and has no cure, but specialists at Shriners Children's Florida strive to provide comprehensive support to each patient to ensure that they are addressing every facet of the condition, including custom wheelchairs and orthotics, rehabilitation services and surgical interventions. In Jessie’s case, her medical journey has included all of these aspects of care.
Shortly after becoming a Shriners Children's patient, she had serial casting on her right clubfoot and underwent an Achilles tendon lengthening procedure on both ankles. This enabled Jessie to walk flat-footed and wear her knee-ankle-foot orthotics (KAFOS), which were custom made for her by Pediatric Orthotic and Prosthetic Services – East, LLC, at Shriners Children's Florida. The KAFOS provide Jessie with extra bracing above her knee to the top of her leg, which helps her walk with more stability.
“Thanks to all the efforts of many at Shriners [Children's Florida], Jessie can walk with her crutches so she is not confined to mobility only with a wheelchair,” her mother, Eileen, said. “That alone shows what a significant impact Shriners has made on her life. Without them, I don’t know where we would be.”
The now 15-year-old is actively involved in her weekly all-ability dance group, REVYouth, and loves it. So much so, that she used to take dance as an elective throughout middle school. Jessie loves performing and has had many opportunities to do so. Some of her favorite performances were at the University of South Florida’s 2018-2020 Dance Marathon events, which benefitted Shriners Children's Florida; she and her dance team earned a standing ovation all three years. During the height of the COVID-19 pandemic, Jessie was participating in her dance classes virtually via ZOOM. She is grateful to be back in the dance studio every weekend now. She also loves learning new dance moves and routines from watching YouTube and TikTok videos.
When not in the spotlight, how does the tenth-grader like to spend her time? Jessie is a part of her school’s choir and loves singing. Her current favorite artists include Olivia Rodrigo, Billie Eilish and Imagine Dragons, to name a few. “Without a doubt, Queen and Freddie Mercury are her current obsession, though,” Eileen said. Jessie also loves playing with her cat, Nicole, and frequently fantasizes about taking a trip to Paris to see the Eiffel Tower one day.
Jessie’s smile is infectious and is one of the many things people appreciate about her. So it comes as no surprise that she is called upon frequently to represent Shriners Children's Florida as a Patient Ambassador. She has created a strong bond among other ambassadors and serves as an example to younger patients who are overcoming similar challenges.
When you ask Jessie what she likes most about Shriners Children's Florida, she says “everything!” Jessie is happy to share the story of her own medical journey and has even been featured on the front cover of the local Shriners chapter's (Egypt) publication, The Sands, with a caption that reads, “This is Why We Do What We Do.”
“Shriners will always have a special place in my heart,” Eileen said. “Being able to see so many doctors collaborate all for the same result of Jessie being the best Jessie she could be... is what I wish every parent with special needs kids could experience.”
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