It’s a condition so rare, there are only a few hundred known cases anywhere in the world. Known as Alternating Hemiplegia of Childhood, or AHC, the disorder causes frequent and momentary epileptic-like spells of paralysis.
Brittany Deluke, now 23, suffers from AHC. It took doctors nine years to figure out exactly what was wrong with her.
„The problem is a lot of kids who have this are being misdiagnosed with epilepsy or other disorders,“ Brittany’s parents Sheri and Rob explain.
When a bout of AHC happens, it can be scary for the Delukes. „She can’t speak. She can’t walk. She tears up. She can’t really swallow too well. We always have to make sure she’s upright, and then all of a sudden she’ll come out of it after 20 minutes,“ the Delukes say. „It’s kind of being trapped in her own body.“
Complicating Brittany’s condition is that so little is known about AHC. In fact, Dr. Irene Malaty, Brittany’s neurologist at Shands Hospital at the University of Florida in Gainesville, barely knew anything about the disease just a few years ago. „It’s so rare that a lot of neurologists can go their entire career without seeing a case of it,“ Dr. Malaty points out.
While the Delukes and other families hope for a cure, or even better treatment, Brittany tries to stay positive despite an often discouraging condition. „It’s hard. It’s hard to live like this,“ Brittany told us as she fought back tears. „It is.“
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