Charlee, six, with seizure disorder dies days after namesake law is passed allowing hemp oil to be used for sick children

Charlee Nelson, 6, died Saturday after suffering from a rare seizure-inducing condition called Batten disease

The Tuesday before her death, Charlee made her last outing, to the Utah Legislature as senators voted on Charlee's Law

The bill HB104 was named in her honor and will allow children suffering seizures access to cannabis oil

Cannabis oil is shown to lessen seizures

The bill was passed in both the Utah Senate and House of Representatives

It was too late for Charlee to benefit from the oil

A little girl has died just days after a Utah bill, HB104, was named Charlee's Law in her honor

Six-year-old Charlee Nelson died on Saturday after battling a debilitating neurological disorder called Batten disease.

On Thursday, the Utah Legislature passed a law named for Charlee that allows children with seizure-inducing conditions to have access to non-intoxicating cannabis oil, which has anti-seizure properties.

Little angel: Charlee Nelson died surrounded by family on Saturday, just days after Charlee's Law passed

Debilitating: Charlee's mother, Catrina Nelson, was heartbroken as her daughter suffered seizures and the loss of her faculties as a result of Batten disease

Charlee's parents Catrina and Jeff Nelson had their daughter on a waiting list for the oil but her rapidly declining condition prevented them from taking part in the legislative process.



On Tuesday, Catrina Nelson 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 told the Deseret News. '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 Nelson was just three-and-a-half when she had her first seizure. Up until that point, she had been a normal, healthy little girl who loved dancing and singing.



Doctors were baffled by Charlee's sudden illness and it took 21 months before her family had a diagnosis: Batten disease.



Sudden: Before the illness came on, Charlee was a healthy three-year-old who loved to sing and dance

'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?' her mother told the Deseret News.



The diagnosis was no relief for the Nelson family.



Over time the rare condition leads to mental impairment, worsening seizures, loss of sight, speech and motor skills, and eventually death.



'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.'



Brave: By the age of six, Charlee couldn't see, eat, speak or walk and sometimes suffered hundreds of seizures a day

Youngest child: Charlee (being held by father Jeff) with her family

Cannabis oil wouldn't have cured Charlee's condition, but it would have helped ease the severity of her brain-damaging seizures and prolonging and improving her quality of life.



Towards the end of her life, Charlee was having as many as 500 seizures a day.



The oil will also help children with untreatable epilepsy.



On March 4, Charlee returned home from the hospital to spend the rest of her life with her parents, brother and sister.



The Tuesday before her death, she made her last outing, to be present as Utah senators cast their votes on Charlee's Law.



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



Jeff and Catrina Nelson say they wish their little girl had had the chance to try the treatment, but they are happy that other sick children will now benefit from it.

