In Support of Sadie Long
8-year-old Sadie Long’s life changed in an instant on April 7th when she suddenly passed out at school. What began as a terrifying emergency quickly turned into a journey no family ever expects. Sadie was rushed to the ER, transferred to Pensacola, and then emergently flown to Nemours Children’s Hospital for critical care.
After extensive testing, Sadie was diagnosed with Carvajal Syndrome — an extremely rare genetic condition that affects the heart muscle and can lead to life-threatening heart complications. In Sadie’s case, doctors recommended a heart transplant.
Sadie was transferred to UF Health for a complete heart transplant evaluation. Doctors determined her to be a Status 1A, which is the most critical, for a heart transplant. She was admitted to to UF and waited for her miracle heart. On July 13th she underwent transplant surgery and spent a month in CICU recovery for complications post surgery. After being released from the hospital Sadie and Rose spent an additional month in Gainesville undergoing clinic follow ups before being released to return home.
As a pediatric heart transplant recipient Sadie requires ongoing immunosuppressive therapy and close medical monitoring. Her immunocompromised state places her at increased risk for serious infection and complication making appropriate care and minimizing exposure to infectious environments paramount.
As a pediatric heart transplant recipient Sadie requires ongoing immunosuppressive therapy and close medical monitoring. Her immunocompromised state places her at increased risk for serious infection and complication making appropriate care and minimizing exposure to infectious environments paramount.
As you can imagine, Sadie’s family, are overwhelmed emotionally, physically, and financially as they try to navigate this medical crisis and change of life while staying strong. Through it all, they continue trusting that God is with Sadie every step.
Most importantly, we ask for your prayers. Please pray for wisdom for Sadie’s medical team, strength for Rose, peace for Sadie and Harper as they navigate this new path.
Please continue following this page for updates and ways to support the Long family during this journey.
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- Created May 27, 2026
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