In Support of Sadie Long
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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 are now preparing for the possibility of a heart transplant.
Sadie will soon be transferred to UF Health for a complete heart transplant evaluation. Doctors will perform additional scans and reevaluate her condition next week. If she is approved and placed on the transplant list, Sadie and her family will need to temporarily relocate and remain near UF Health while they wait for a donor heart. The current average wait time is estimated to be 6–9 months.
As you can imagine, Sadie’s family, are overwhelmed emotionally, physically, and financially as they try to navigate this sudden medical crisis while staying strong for their daughter. Through it all, they continue trusting that God is with Sadie every step of the way.
Many of you generously supported the family through their previous Spotfund campaign, and over $16,000 was raised to help during the earliest days of this emergency. Those funds have already been largely exhausted through emergency travel, medical-related expenses, lost work time, meals, lodging, and ongoing costs connected to Sadie’s care. As the family now enters what could be a many-month transplant journey, they are essentially starting over financially while facing a long road ahead.
We are transitioning to a SupportNow page because it allows loved ones to support the Long family in more personal and practical ways throughout this journey. In addition to financial support, family and friends can:
• Send meals directly to the family
• Volunteer through the “Lend a Hand” feature for practical needs
• Follow updates in one central place
• Encourage the family through messages, prayer, and support
• Send meals directly to the family
• Volunteer through the “Lend a Hand” feature for practical needs
• Follow updates in one central place
• Encourage the family through messages, prayer, and support
Most importantly, we ask for your prayers. Please pray for wisdom for Sadie’s medical team, strength for Rose and Will, peace for Sadie, and that the perfect donor heart would come at exactly the right time.
Please continue following this page for updates and ways to support the Long family during this difficult season.
Updates
Keep up to date as needs change.
Jun 01, 2026
Waiting for Echo and Follow Up - 1 June 2026
Today Sadie, Rose, Harper, and Will are at the hospital waiting for...
May 31, 2026
Love from a Grandmother
It's hard to comprehend your granddaughter going from a very active...
May 31, 2026
Fireworks, love and magic
We are blessed.The hospital room from Orlando faced Disney but it w...
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Lend a Hand
Volunteer for errands, childcare, or other needs.
- Created May 27, 2026
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Words of Support
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Anonymous
lisa Apple
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Teresa Turner
Kira Bramlett
Mitzie Buckelew