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In thinking back, Sydney recalls her initial injury, "At first my right knee injury appeared to be fairly usual, and the doctor expected a complete recovery."
At the time, nine-year-old Sydney was a dancer who had landed on her knee during an acro-dance routine. Then, she injured it again, and the excessive throbbing sent her to Mayport Naval Station Clinic. Regressing to the point that for much of her 5th grade year she needed a wheel chair, Sydney’s debilitation and pain escalated. Fortunately, her Mayport physician referred her to Wolfson Children’s Hospital.
Once at Wolfson, the Nemours’ doctors aggressively pursued a diagnosis. Reflex Sympathetic Dystrophy (RSD), a chronic neurological syndrome, is a condition that causes severe pain and swelling. It strikes girls five times more than boys, frequently just before puberty, and is often brought on by an initial stressful event. In Sydney’s case, it was the dance injury. Mom Jennifer remembers the week of daily, aggressive physical therapy in the hospital. Jennifer recalled with relief, "Sydney went into Wolfson in a wheelchair and then walked out. She got back to being a kid."
All went well for two years, and then in 8th grade, Sydney started having severe headaches and raging fevers. From 8th through 10th grade, Sydney was practically bedridden, unable to attend school, and went to Wolfson’s ER frequently. She saw lots of specialists, but her symptoms continued. In Jennifer’s words, "Sydney was melting away, physically and emotionally. Her diagnosis was elusive; Sydney lost belief in herself."
Then one day, Sydney met the Wolfson doctor who would become her champion. With a smile, Sydney recalls that he reminded her of her grandpa. "This wonderful doctor told me that they were going to figure this out."
"Being heard was the biggest gift of hope," Jennifer said. This doctor assembled the right physicians during her ten-day stay, and Sydney was treated for fibromyalgia plus the RSD. Once stable, she was released to Brooks Rehabilitation Hospital, which provided the coordinated rehab care that Sydney needed both as an in-patient and then as an out-patient.
Sydney is thankful for Brooks, and also reflected on her care at Wolfson. "I loved my nurses. They brought me ice cream when I lost four pounds in a week. Sydney also loved Art with a Heart in Healthcare. She loved the art, but most of all, she loved the artists. Art with a Heart has helped restore Sydney’s sense of self, but it is also enabling her to earn volunteer hours necessary for a Sunshine State scholarship for college.
Sydney, always with her beautiful smile, has learned to manage a condition that often leaves her weak and in pain. But during her days in Wolfson, Sydney felt like a princess with the big rooms and beautiful views. Jennifer concludes that you can’t pay somebody back for the gift of your child. "Wolfson Children’s Hospital saves families, not just the kids, but their families as well." |
