She's tried numerous medications, diets and treatments, but says none has worked against Stockton May's rare form of epilepsy known as Dravet syndrome.
Jennifer May is a staunch Republican who once thought giving medical marijuana to children was crazy.
Now, she's pushing for a state law that would allow the use of a liquid form of medical marijuana available in Colorado that she believes is helping children with the same syndrome.
"We don't think it's a cure, we don't expect it to be a miracle. It just needs to be something we can try for our kids that don't have anything left," said May, 40, of Pleasant Grove. "I want to see if this can even give my child a quality of life for a few years."
Her story was first made public in a blog post last week by the Libertas Institute, a Utah Libertarian group. The Salt Lake Tribune wrote about her Wednesday.
The Epilepsy Association of Utah supports May's push and notes the medical value of extracting cannabidiol from the cannabis plant for people with epilepsy.
"It comes down to the medicines currently available," said Annette Maughan, president of the Epilepsy Association of Utah. "Either the side effects are horrendous and life-threatening or the efficacy of the drug is just not there."
However, the Institute of Medicine and the American Medical Association have said more research needs to be done, while the American Academy of Pediatrics doesn't support medical marijuana prescriptions for children, the Tribune reported.
May isn't the only parent turning to medical marijuana to aid their children. A family in Mesa, Ariz., plans to give their 5-year-old son medical marijuana to help treat his genetic brain defect, the East Valley Tribune reported.
In New Jersey, a family fought to get their 2-year-old with the same syndrome as Stockton May access to medical marijuana. Parent Brian Wilson confronted Gov. Chris Christie at a campaign stop, saying, "Please don't let my daughter die."
Christie eventually signed off on legislation that allows marijuana to be distributed in edible form and permits growers to cultivate more than three strains. But he stopped short of eliminating a requirement that a pediatrician and psychiatrist sign off before children gain access to the drug.
Jennifer May became convinced the drug could help her son as she researched its use by children with the same syndrome. She talked with the mother of a 6-year-old girl named Charlotte in Colorado who said her daughter's life has improved dramatically since taking a strain of medical marijuana now called "Charlotte's Web."
The strain comes from a genetically modified cannabis plant developed by a nonprofit in Colorado called Realm of Caring. So far, May's research has indicated there have been no side effects - unlike other drugs and treatments for the syndrome.
May has considered moving to Colorado and applying for a medical marijuana card but said that's impractical. Her husband has a good job with great medical insurance; her mother has cancer; and her two older children, an 18-year-old boy and 14-year-old girl are in high school.
"We have a lot to lose by moving," she said.
May said she doesn't want to make it legal to grow pot in Utah but would like it to be possible to bring a liquid or oil form of the drug to Utah from Colorado. She said liquid pot would have no street value because it contains low quantities of the ingredient that gets people high.
"It's not smoked, it's not eaten in brownies, nothing like that," she said, adding that it's given orally.
Utah's Republican-led legislature has traditionally been opposed to efforts to decriminalize marijuana. However, that could change as people tell their stories of why it matters, said Connor Boyack, president of the Libertas Institute, a Utah libertarian policy group that supports the push. He said legislation will be introduced in the next session that starts in January.
"It is easy to oppose this when you think it's people getting high and people pretending that they're sick," Boyack said. "It's much harder to deny people this medical option when you know the specific circumstances of their story and how much relief it might bring them."