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.
Sintz is a member of Hope 4 Children With Epilepsy, a group of Mormon moms in Utah that has now found a lawmaker willing to help them secure a way to legally import an extract from a cannabis plant.
"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 a ban 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.
He's calling it "Alepsia," which means belonging to seizure. Forerer says the THC levels in Alepsia are the same as those found in industrial hemp and its extractable oil and proteins, which are used in over-the-counter lotions and soaps.
Nothing in federal or state law prohibits the sale or use of hemp products, Froerer said.
"They could go over to Colorado right now and bring it in," he said. "But they don't want to do anything that might be perceived as breaking the law."
Twenty states permit medical use of marijuana. Colorado and Washington also allow recreational use of the drug.
No state has legislation that specifically mentions the use of high-CBD cannabis in the form of oral concentrates, according to the Epilepsy Association of Utah.
"Utah has an opportunity to be innovative," said the association's president, Annette Maughan, whose 6-year-old son also has untreatable epilepsy.
"We are desperate in our need for this legislation to happen in this session. Our children are seizing every day," she said in a prepared statement.
There have been no randomized clinical trials of Alepsia.
But there is evidence from animal studies and limited clinical studies in humans that marijuana and its cannabinoids have antiepileptic effects, according to a 2001 article in the journal Epilepsia. "These may be specific to partial or tonic–clonic [grand mal] seizures," it said.
A drug company, GW Pharmaceuticals, is running investigational trials on a CBD drug. But it could take a decade for it to win approval, too late for kids like Isaac.
Dravet Syndrome is a rare, hard-to-treat form of epilepsy characterized by the number and severity of seizures, sometimes hundreds a day, lasting 45 minutes or more.
There is no cure. The disease can be fatal, and the treatments that exist have "horrible" side effects that only add to Isaac's developmental harms, said Sintz.
"We have nothing to lose," said the South Jordan mother of four.
Isaac was born healthy and developed normally until his first febrile seizure at 6 months of age, which Sintz said doctors initially believed was triggered by an immunization.
"We stopped doing immunizations and he stopped having seizures, but when he turned 3 he started having seizures every day and had to be hospitalized," Sintz said. "He wouldn't eat or go potty or anything and had to get a feeding tube. At that point, they told us he might never walk or talk again."
Genetic tests confirmed Dravet Syndrome.
The Sintzes flew to Miami to meet with Dravet specialists. They tried everything special diets, alternative therapies and toxic psychoactive drugs.
He uses Clonazepam, a benzodiazepine, to stop his seizures and another drug that helps keep them at bay.
"He can walk and carry on a conversation, but functions on the level of a 3-year-old," said Sintz.
But the drugs are ruining his kidneys and adding to a heart condition he has developed. "Our fear is he is going to die of a seizure or organ failure," she said.
Meanwhile, Issac's mental capacity deteriorates by the day.
Sintz has contemplated taking Isaac and her two youngest children to Colorado, but it would mean leaving the team of doctors who monitor her son and her family support network.
"My sister lives just up the road and helps out. We live in crisis mode and she keeps us functioning," she said. "My only choice is to go to Colorado and bring the herb here. But I can't take the risk of getting caught doing something judged illegal. I can't jeopardize my family."
There is a waiting list for Alepsia.
But Maughan said if Utahns are granted access, "My understanding that the plants will then be grown specifically for our children."
Said Froerer, "This herb has no social disadvantages since it is not and can not be used to get high. I see nothing but positive social and medical benefits if this will work."
Tribune reporter Kristen Moulton contributed to this story.