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Family Advocacy Day Hero -- Meet Keely J.

Keely J., Age 3   Keely J
Hometown: Ormond Beach, FL
Hospital: Wolfson Children’s Hospital, Jacksonville, FL

Immediately after a premature birth, Keely was rushed to the Level III neonatal intensive care unit at Wolfson Children’s Hospital. She weighed only 2 pounds, 8 ounces and was diagnosed with Pierre Robin syndrome, a congenital condition that causes her to have a smaller-than-normal lower jaw and a tongue that falls back in her throat. Her tongue condition can obstruct her airway and causing difficulty breathing; it can also interfere with swallowing and feeding.

Only days old, Keely had a craniofacial procedure to correct her jaw condition. Although Keely was able to go home when she was 4 months old, she continues to see doctors regularly and will start heart monitoring services at the new Wolfson Children’s Specialty Center in Daytona Beach in the near future. She will have more surgeries on her jaw in the future as she grows and doctors move toward removing her feeding tube and the tracheostomy in her neck that helps her breathe.

Now 3 years old, Keely knows her colors and shapes, plays memory games, and attends preschool. According to her pediatrician, Keely’s phenomenal progress can be attributed to the care she received at home from both her parents and her home health care nurses.

Fact: The two million sickest children on Medicaid account for only six percent of enrollees but 40 percent of costs.


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