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(Francisco Kjolseth | The Salt Lake Tribune) Catrina Nelson of West Jordan holds her daughter Charlee, 6, who suffered from Late Infant Batten Disease, a terminal inherited disorder of the nervous system that leads to seizures and loss of vision and motor skills. Her daughter, who was on hospice care at home,was been surrounded by friends and family as they comforted one another during her final moments.
Days after Charlee’s Law passes, Charlee Nelson dies at age 6
“Charlee’s Law” » She was symbol in crusade to improve quality of life of kids with seizures.
First Published Mar 15 2014 03:18 pm • Last Updated Mar 16 2014 12:16 pm

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.

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"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.

Charlee’s father, Jeff Nelson, believes his daughter "held on" for the legislation to pass.

More than a week ago, she was near death’s door but when invited late last week to the House and Senate floors for final passage of HB105, she rose to the occasion, Nelson said. "She was in good enough shape to be there and be present. In the House when all the representatives stood up and gave her a round of applause, she perked up like she knew it was for her."

Froerer said some representatives "really broke down" when they saw Charlee brought to the floor in a wheelchair.

Cannabis oil wouldn’t have cured Charlee, but it might have calmed her seizures and prolonged her life.

Jeff and his wife, Catrina, say they are grateful for the Legislature’s courage and compassion and the community’s support.

"We feel more than honored to have her name attached to this law for what it will mean for parents like us who are so desperate for seizure control," said Jeff Nelson. "It’s a way of remembering Charlee, to let her name live on. "

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Private services will be held later next week. In lieu of flowers, the Nelsons ask that donations be made to www.charleesangels.org.

Tribune reporters Kirsten Stewart and Lee Davidson contributed to this story.


Twitter: @matthew_piper

Copyright 2014 The Salt Lake Tribune. All rights reserved. This material may not be published, broadcast, rewritten or redistributed.

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