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SALT LAKE CITY — Two-year-old Leah McClellan, dressed in light purple, stared at the ceiling of the House gallery while lying in her grandfather's lap.
She hardly moved and didn't crack a smile like other toddlers might.
Leah is on medication that has severe side effects — such as making her sedated and catatonic — and is only a somewhat effective treatment for the five to 20 seizures she has daily.
Leah smiles on "good days," which happen only about once a month, her mother said.
What Leah was oblivious to Monday afternoon was the Utah House's 62-11 passage of a bill that would allow the use of hemp oil extract for the treatment of seizures related to intractable epilepsy. HB105, which has been revised and substituted seven times, will now go to the Senate.
About 100,000 people in Utah have epilepsy, according to the Epilepsy Association of Utah. Nearly 33,000 of those people have seizures that are refractory or difficult to control.
"Seeing her suffer her seizures is the most heartbreaking thing a mom can experience because there's nothing we can do but just hold her hand," said Leah's mother, April McClellan of Herriman.
McClellan said her daughter started having seizures at 5 months and now is usually "blank" except a dozen times a year when she makes eye contact with her parents and responds to her name.
"She was just a really cute, happy baby, and then seizures began and they never stopped, except if she has a good day," McClellan said. "This is our daughter's last hope, and we can't wait. We just want to see our daughter again."
The bill would legalize possession and use of the extract, taken from marijuana plants. An amendment put a sunset date of July 2016 on the bill to allow for review.
Under the bill, Utahns would receive a one-year waiver from the state health department if they apply and meet certain requirements, including a written recommendation from a board-certified neurologist.
"All we’re doing, very simply, is saying if you as a parent, as a family unit and your certified board neurologist thinks that this may be an opportunity to help your child, that you should have the right to do it," said bill sponsor Rep. Gage Froerer, R-Huntsville.
Froerer said studies show the extract can reduce the number of seizures that children with epilepsy suffer, sometimes from 100 a day to zero.
The Utah Medical Association opposed the bill in committee, voicing concerns over safety and lack of clinical trials and scientific evidence. On the floor, Rep. Stewart Barlow, R-Fruit Heights, questioned the Legislature bypassing the Food and Drug Administration's system.
FDA approval could take eight to 15 years — time that these Utah children don't have, Froerer said. He also added that the hemp oil is a plant extract, not a medication. These are already unhealthy kids dealing with harsh side effects, he said.
Rep. Ronda Menlove, R-Garland, said her son had a seizure disorder as a young child and his medication had "lengthy" lists of side effects. He stopped taking the medication as he got older because he felt like he was in a fog and couldn't learn in school.
"When we talk about the unknown side effects, when you look a the known side effects of the medications children take with seizure disorders, it’s absolutely frightening," Menlove said. "If my child were in this situation, I would want to try whatever options I could."
Froerer said more than 30 states already have some form of epilepsy protection and parents should be allowed to do what they, with medical advice, think is in the best interest of their children.
"I'm thrilled that we made it through the House," said Karen Glenn, of Orem.
Glenn sat with her 19-year-old daughter, Amelia, who has Dravet syndrome. This means sometimes thousands of seizures a day and 20 convulsive seizures over the past week.
"You can see that 19 years of living with this kind of condition has left her functioning at about a 3-year-old level, so she should be going to college now or serving an LDS mission, but instead she finds she can't tie her own shoes or write her full name," Glenn said.
Amelia has tried well over 30 FDA approved treatments, some of which have had life-threatening side affects. Glenn said the unknown side effects of hemp oil are worth the risk.
"What I really hope is that this treatment will give her the opportunity for a greatly improved quality of life," she said. "It's painfully clear what kind of effect the seizures have on them from all these years, so we're very willing to take our chances."