One of 50 Utah children on a waiting list for nonintoxicating cannabis oil, 6-year-old Charlee Nelson, of West Jordan, died early Saturday. Just Thursday, the Utah Legislature passed a law, named in her honor, to improve the quality of life of children with seizures.
Diagnosed with Batten disease, Charlee’s first seizure was in May 2011, and as her condition worsened she would sometimes have hundreds in a 24-hour period. She stopped eating in February. On March 4, she came home from the hospital to spend her final days in the care of her parents, Jeff and Catrina.
“We appreciated the family sharing Charlee on her last days with myself and the state of Utah,” says Rep. Gage Froerer, sponsor of HB105, adding that her name will live on as the bill helps other children with seizure-inducing conditions.
“Charlee’s Law” passed the House and Senate by wide margins and is expected to be signed by Gov. Gary Herbert. The bill would allow those with intractable epilepsy to first acquire written permission from a neurologist and then apply for a waiver to import cannabis oil.