Parents remember child, 6, who died days after law was passed in her name

Published: Sunday, March 16 2014 9:00 a.m. MDT

WEST JORDAN — Charlee Nelson was a young girl who loved to dance, sing Twinkle, Twinkle Little Star and read books.

"She was kind of shy, but at the same time, she loved to make people smile," her father, Jeff, said. "She loved that kind of interaction, making people happy."

Charlee was just 3 1/2 when she had her first seizure. Saturday, she passed away at the age of 6.

Her death came just days after a Utah bill, HB105, was named Charlee's Law in her honor. The bill allows the use of non-intoxicating hemp oil extract from marijuana plants to treat refractory seizures related to epilepsy.

"If we would have had an option like the oil, that would have been a miracle to have," Jeff Nelson said.

Though Charlee had her first seizure at age three, it took some time for her family to learn what was causing them.

"It took 21 months to diagnose as we just watched her decline slowly," her mother, Catrina, said. "It was the worst thing because you're watching your child go from a normal, active little girl to not being able to walk, talk, see and in the meantime you're doing all these tests and they're coming up empty and it's like what the heck is happening to her?"

In February 2013, her family was given Charlee's diagnosis: Batten disease. The neurological disorder leads to mental impairment, seizures, loss of bodily control, sight and eventually death. Over time, she would suffer hundreds of seizures each day and lose her sight, motor skills and cognitive ability.

"It used to cause her pain," Catrina Nelson said. "She would cry and cry and she was confused about what was going on and didn't understand. It was horrible to watch her fall and bump her face and her head and her teeth."

"You feel really helpless and you feel desperate," Jeff Nelson said. "We felt desperate as parents because medications weren't having an effect."

Halloween was a turning point, Catrina Nelson said. Though she had lost her vision, Charlee was still able to sit up and scoot around.

The day after Halloween, Charlee went to the hospital and stayed for 11 days.

"She was never the same," Catrina Nelson said.

She said her family had been in touch with other families with children who suffer from seizures and that Charlee was on a waiting list for the hemp oil. But the decline in Charlee's health kept the family from taking part in the legislative process.

Tuesday, she said she was called and asked if the family would allow HB105 to be named for Charlee.

"I didn't know what to say," Catrina Nelson said. "I was honored, but we felt unworthy of it because we hadn't done much for the bill. It was the selfless act of these women who were fighting and doing so much to allow it to be called Charlee's Law. It was just incredible."

Charlee and her parents were present Tuesday as senators cast their votes on the bill. Jeff Nelson said he believed the other families wanted the bill named for Charlee, knowing she was one child on the waiting list who would never benefit from the oil.

"They did it out of respect for her," he said. "(Charlee) touched a lot of hearts ... I believe they felt she could have an impact.

"We saw many senators with tears in their eyes."

The bill passed both the Utah Senate and House of Representatives.

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