Chip Chick
Boynton Beach, Florida. In 2020, Johnny had his first seizure. Doctors conducted genetic testing to see what might’ve caused it but came up empty-handed.
When Johnny had his subsequent seizure seven months later, his team decided to hospitalize him to observe his brain activity during an episode.
But his attacks soon grew more regular, increasing from a few per month two several seizures a week.
His mom, Danielle, turned anywhere she could for answers, putting Johnny’s name on specialists’ waitlists and allowing doctors to try new medications when the previous ones were ineffective in preventing Johnny’s episodes.
Eventually, doctors found a name for his condition, which Danielle shared in a post on GoFundMe. “ESES which stands for “Static Epileptic Slow Wave Sleep.”
His brain activity is overstimulated which causes him to have brain spikes every second throughout the day. In each minute his brain activity is at 95 percent.”
This complex diagnosis meant that Johnny’s life would not go back to normal anytime soon and that his family would have to be incredibly vigilant to keep him safe.
His seizures, which had been “focal,” became “grand mal” or full-body, and his family had to keep him home from school to avoid a health crisis without capable adults present.
GoFundMe; pictured above is Johnny
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