MIRACLE MATTIE

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A story of rare disease, radical care, and the quiet strength that carries us.

.In 2023, my youngest sister, Mattie was diagnosed with Biliary Atresia, a rare and life-threatening liver disease. At just two months old, she was admitted to the Pediatric ICU at AdventHealth for Children in Orlando, where she would spend the next 185 days under the care of nearly 80 nurses. 

Her condition was so critical that she wasn’t even eligible for the liver transplant she desperately needed. 

Against overwhelming odds, and through the extraordinary efforts of her care team, Mattie survived.  Her journey not only changed the way children with her condition receive care, but also brought attention to larger gaps in the medical system that affect families navigating rare diseases every day. 

This experience reshaped the understanding of what it means to fight for someone with everything you have.

 It became the foundation for The Miracle Mattie Project, a one-hour multimedia presentation developed in early 2024 as a keynote for Prosper 2024, led by Michael and Allison Beacham.

 Through video, live narration, and immersive storytelling, the presentation traces Mattie’s first year: the unanswered questions, the nurses who never gave up, and the family who stayed in the fight.

Her story is far from over. As Mattie’s journey continues, so does the vital work of raising awareness and improving care for children with rare diseases like organ diseases. This project stands as a testament to the strength of families and the importance of hope, advocacy, and community.