UTAH: Every week a tutor comes to April Sintz’s home to teach 7-year-old Isaac his letters. Developmentally delayed due to a rare seizure disorder, he is able to grasp the shapes and sounds but soon forgets them.
“It’s one step forward and two steps back,” said Sintz, who hasn’t lost hope that Isaac will one day read. Nor has she given up her pursuit of an “herbal” treatment — available only from a medical marijuana dispensary in Colorado — that has worked miracles for some children with severe, intractable forms of epilepsy.
“It’s not a drug, it’s not medical marijuana,” said Rep. Gage Froerer, R-Huntsville.
The plant, cultivated by the nonprofit Realm of Caring in Colorado Springs, is high in cannabidiol (CBD) but low in tetrahydrocannabinol (THC), the psychoactive chemical component of marijuana that creates a high in users.
It’s so low in THC, in fact — it contains 0.5 percent THC and 17 percent CBD, according to Realm of Caring’s website — that the dispensary was having trouble finding a market for it. Then staffers met Charlotte Paige, a young girl from a conservative military family in Colorado with Dravet Syndrome, the same disease Isaac has.
Regular doses of the oil-based extract from the plant stopped the progression of Charlotte’s disease, as shown in the CNN documentary “Weed.”
After taking it, she went from having 300 seizures a week to one, at most, according to the documentary. Previously catatonic, she is now walking, eating, talking and playing.
Bringing the extract to Utah may not require legislation, said Froerer, the same lawmaker who pushed aban on a synthetic form of marijuana, “spice.” But he has committed to sponsor a bill if needed.
First, he is seeking buy-in from the Utah Substance Abuse Advisory Council to treat the extract as something other than a controlled substance, allowing families to import it without risk of being arrested.