That’s what Mallory Jo Johnson has gone through so she could save her daughter’s life. Zoey Johnson, 6, suffers from a rare seizure disorder known as Dravet Syndrome with only 600 reported cases worldwide. The seizures began when she was 3 months old, but it took more than 3 years and dozens of tests before doctors at Cook Children’s Health Care System in Fort Worth, Texas, diagnosed the toddler with Dravet’s, the girl’s grandfather, Marty Piel, said in an interview with Oklahoma Gazette.
Every possible medication has been prescribed by doctors, Piel said, including two that have not been approved by the U.S. Food and Drug Administration. Until about three weeks ago, nothing worked. Zoey experienced almost every type of seizure known to modern medicine, including thousands of head drops, or atonic seizures, in one day.
Then the family decided Mallory and Zoey should move to Colorado. In September, Zoey received her first cannabidiol (CBD) treatment — CBD is a non-intoxicating component of marijuana but still is illegal in Oklahoma. In Zoey’s case, the CBD is mixed with less than a milliliter of THC in an olive oil base. Drops are placed under her tongue.
Typically, Zoey receives three treatments a day. Since the treatments began, she has learned 20 new words, is speaking in four- and five-word sentences and wrote her name for the first time, Piel said. Before the treatments began, doctors compared her developmental to that of a 27-month-old.
“She’s starting to play, she colors and she pretends like other kids,” her mother said. “She’s also going to school for the first time, and she’s happy, sings and has fun.”
–Tim Farley, Oklahoma Gazette
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