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Parents grieve dying 6-year-old, a candidate for cannabis

Utah family says its goodbyes while praying for legislation to get cannabis oil to seizure-stricken kids.

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"I try to be strong and stuff but it’s hard. You shouldn’t have to bury your baby," she said. "Parents talk of a lifetime of epilepsy; I would take epilepsy in a heartbeat. It’s all devastating, but to watch your child go from normal to lifeless in a manner of months … there are no words."

Interactive graphic: Utah kids with epilepsy await cannabis oil

At a glance

Cannabis for kids

Moved by the plight of children such as Charlee, lawmakers largely have supported allowing their compassionate use of nonintoxicating cannabis oil, but they remain concerned the oil may be abused.

HB105 would give families trial access to the oil under the auspices of research. Only those with intractable epilepsy and written permission from a board-certified neurologist could apply to the Utah Department of Health for a waiver giving them permission to import cannabis oil.

The oil would have to be certified to contain at least 15 percent cannabidiol (CBD), the chemical believed to have anti-seizure properties, and less than 0.3 percent of tetrahydrocannabinol, or THC, the psychoactive chemical that gives marijuana users a high.

Plus, the bill was amended to expire in two years, allowing lawmakers to test its results.

The Senate is expected to amend the bill again to require the health department to work with law enforcement officials to ensure waivers aren’t easily forged. In addition, neurologists would have to send their written permission to health officials electronically to avoid fraudulent recommendations.

To donate

For information on how to donate to help the Nelsons cover their daughter’s medical costs, vist: http://www.charleesangels.org

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