PLEASANT GROVE — A Pleasant Grove mother said she is hoping Utah lawmakers can find a way to allow a certain marijuana-based medicines into the state to help her son who suffers from a rare disease.

Jennifer May said she has tried more than 25 different treatments, ranging from special diets to medications, for her 11-year-old son, Stockton, who suffers from a rare form of epilepsy called Dravet Syndrome.

The condition starts in infancy and children do not outgrow it. It can cause a myriad of developmental delays, chronic infections and seizures. Stockton has five to 30 seizures a day.

No cure has been discovered, and even treatments are limited, so May said she is trying as many avenues as possible.

May said she has learned about a marijuana-based medication used for children in Colorado with Dravet Syndrome from a nonprofit group called Realm of Caring. She said the drug is dramatically helping the children who take it.

"It is very different and we've got to find a way to get it for our kids," May said.

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The C-B-D chemical is extracted from the cannabis plant and made into a drop that is taken by mouth. May said the T-H-C chemical, which is what is what causes the "high" from marijuana, is not included in the drug.

She said the results in Colorado have been amazing, so she wants that specific drug allowed in Utah.

"Our goal is to make this particular product available for our kids," she said. "If someone else needs a product for a different disorder, that would be a second step. But for right now, we're looking for a product for our children, and that's the goal."

May said she and 30 other families want lawmakers to allow this specific medicine into the state, but she is not advocating for the legalization of all medical marijuana.

Lawmakers have said they are hesitant about bringing in medical marijuana because other states haven't been very successful with controlling its use.

"California's experience has not been very good," said Sen. John Valentine, R-Orem. "They've found that they've had a lot of illegal use of marijuana and the recreational marijuana type situation."

Valentine said the drug would have to be regulated as a heavy scheduled drug, dispensed in a pharmacy, with a written doctor's note with a narrow exception.

"I'm not even sure we have that narrow of an exception in our statutory framework at this time," he said.

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The difficulty with medical marijuana is that it hasn't been approved by the Food and Drug Administration, Valentine said.

"We have this narrow state exception that we're trying to create on top of a very broad FDA set of regulations," he said. "That's a very tough thing for a state like Utah to deal with."

Valentine said people are very sympathetic to situations like May's, but changes need to make sense.

Matthew Burnett, who has a naturopathic family practice in Salt Lake City, said marijuana can help with symptoms like anxiety, pain and loss of appetite.

Burnett said medicine without tetrahydrocannabinol (THC), or the part of marijuana that gives the "high" feeling, has the those benefits. He said there is clinical evidence of benefits of that type of drug.

The issue continues to resonate nationally. Twenty states and Washington, D.C., have some measure of legal use of medical marijuana that remains in conflict with federal law.

Senate Judiciary Chairman Patrick Leahy, D-Vt. announced Monday that the committee will hold a hearing in September to discuss state and federal marijuana laws.

Contributing: Andrew Wittenberg

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