Help Sybil Shine Brighter
Join us in supporting Sybil's journey with love, prayer and hope.
Help Sybil Shine Brighter
Join us in supporting Sybil's journey with love, prayer and hope.
A Battle No Family Should Face
A Family’s Fight. A Daughter’s Hope. A Community’s Mission.
What would you do if you were told your child had a rare, fatal genetic disorder—one that would slowly steal her sight, mobility, and independence? For Sybil Mizzell and her family, accepting that fate was never an option. Sybil is bravely battling Batten disease, a devastating condition with no approved treatment or cure. Yet, there is hope. A team of world-renowned doctors at Boston Children’s Hospital has developed an experimental therapy that could stop the progression of Sybil’s disease—but it isn’t covered by insurance. Sybil Shines was created to raise the critical funds needed to give Sybil a fighting chance and to light the way for countless others facing rare diseases. Together, we can help Sybil keep shining—one act of love, one prayer, and one donation at a time.
A Timeline of Courage
2012
Started experiencing slow vision loss and color blindness, which was identified through a School Sports Physical. The Pediatrician assumed she just needed glasses, so we went to an Optometrist. The Optometrist realized it was something more significant than just needing glasses, so he referred us to a Retina Specialist, and the search began for answers and the continued search for a cure.
2014
Diagnosed at 14 years old through genetic testing with Batten Disease CLN7 (MFSD8).
2016
She had her first Grand Mal Seizure
2017 - 2018
Vision was somewhat stable throughout high school at 20/70, which required some accommodations for school. Atrophy of the brain was beginning, with some doctors shocked she was not in a wheelchair; instead, she was playing high school soccer, driving her jeep, going to prom, and graduating. The disease attacked, and she attacked back.
2019
Started the college of her dreams, the University of South Carolina. She required accommodations for her impaired vision but thrived in college until late 2021.
2021 - 2022
Dr. Yu’s team officially started working on Sybil’s ASO experimental treatment.
December 2021
Vision declined to 20/150, and grand mal seizures started increasing.
Fall 2022
Cognitive and mobility issues are increasing. No longer able to live on her own.
December 2023
Still fighting back – graduated from the University of South Carolina.
2024
Had 12 grand mal seizures.
March 2025
Crushed because she lost her job as a Teacher’s Assistant due to her vision, cognitive decline, and seizures.
Support Sybil Shines Today!
Time is precious. Sybil’s treatment is ready — but it can only move forward with your support. Every dollar helps fund life-saving research and care that could stop the progression of Batten disease. Join us in the fight to save Sybil’s life and pave the way for a cure.