“I have never felt so powerless as when I watched Isaiah’s first seizure.”
–C. Renzi Stone, Isaiah’s father
Isaiah had his first seizure when he was just four months old. For ten excruciating minutes, his father cradled Isaiah’s rigid body as his eyes fluttered to the back of his head and his legs jerked uncontrollably.
It soon became clear that Isaiah, like one-third of epilepsy patients, was unresponsive to current treatments. On the 333rd day of Isaiah’s life, he had a fatal seizure and died.
At the time of his passing in 2010, there was no known cause for Isaiah’s epilepsy. However, last December, his parents received a call from his neurologist. A periodic re-screening by the lab that conducted Isaiah’s original genetic testing found the faulty gene. Isaiah’s had Dravet Syndrome, a rare, catastrophic form of genetic epilepsy that starts in the first year of life and is characterized by frequent, prolonged seizures.
It’s hard to say if Isaiah’s story would have had a different outcome if he had received the diagnosis sooner. But thanks to CURE’s Epilepsy Genetics Initiative (EGI), families may not have to wait years to find out the truth. Please help us continue these efforts with a year-end gift to CURE.