Meet Shellie
11-year-old Shellie has a genetic seizure disorder called Early Infant Epileptic Encephalopathy (EIEE), causing her brain to atrophy.
Research has found that more than 50 genes are associated with EIEE, but routine genetic tests fail in at least half the cases to pinpoint the cause of the condition. This means treatments and therapies are limited and the medical practitioner’s ability to alleviate the child’s symptoms is also limited. So far, up to 300 daily seizures have cost Shellie her sight and the ability to walk. Her family and caregiver, who are from Southwest Virginia, have stayed with us on two separate occasions while she was treated at UVA Children’s. Shellie and her amazing family truly touch our hearts.
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