Krista McNallyJun 26, 2018, 5:47 pmJun 27, 2018, 8:54 am

FDA-approved CBD oil eliminates young girl’s seizures

The 6-year-old’s mother started a foundation for her daughter’s rare syndrome to help find a cure


PORT WASHINGTON — Nicole Zeitzer Johnson is the mother of a 6-year-old who has FOXG1, a syndrome which renders her unable to care for her own basic needs. She can’t sit up without falling over, uses a feeding tube, and suffers from epilepsy.

"It is the most devastating experience,” Johnson said. “You don't know if it is going to end, you don't know what is going to happen in that moment."

Johnson has been following CBD oil, also known as Epidiolex, as an alternative treatment for her daughter’s epilepsy. The FDA recently approved cannabinoid oil, which is marijuana-derived without the high-inducing effects.

Her daughter, Josie, was diagnosed at 2-years-old and was having on average four seizures a week before taking the CBD oil .

"We started CBD oil,” she said. “A week went by no seizure, two weeks went by, no seizure."

Josie went a full year without having any seizures.

In 2017, her mother co-founded the FOXG1 Research Foundation. In a short time, they have raised over $1 million, funded six research scientists, and kicked off major research on the syndrome in hopes of finding a cure. And, while the condition is rare, the rate of people who have it is increasing and does have links to other brain disorders.

"FOXG1 is such a critical gene in brain development that they are finding links in conditions like autism, Alzheimer’s, brain cancer," she said.

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