A six-year-old girl who helped inspire one of Utah’s newest laws died Saturday morning.
Charlee Nelson sometimes suffered from hundreds of seizures in a single day. The girl’s parents were among those who reached out to law makers for the legalization of cannabis oil in Utah for medical use. The resulting bill was officially called Charlee’s Bill.
The little girl leaves behind a big legacy.
“We just felt honored. We just felt completely honored that her legacy would be continued on after she was gone. That she could help other children to benefit from this, that she never had a chance to try.” said Catrina Nelson, Charlee’s mother.
Charlee’s childhood started out like any other until she had her first seizure at 3 and a half, according to her mother. She was eventually diagnosed with Batten disease.
“It was hard to see your child go through that and not be able to explain why or help them in any way, because the meds weren’t helping, nothing was helping,” Catrina said.
“Her disease was one that slowly would just take one function after another to the point where she was blind, she wasn’t able to eat anymore, she lost the ability to swallow. She couldn’t walk or talk,” said Jeff Nelson, Charlee’s father.
On Tuesday, during her last trip away from home, Charlee’s parents said she felt something.
“They all stood up and gave her a round of applause, and she kind of, her body, she perked up, she was like this is for me and it was and that was the last day that she was awake and happy,” said Catrina about Charlee as the Utah Senate gave a standing ovation to the Nelson family.
After nine revisions, the Utah Senate unanimously passed Charlee’s Law. Catrina said she felt the bill would have passed without Charlee because of the advocates and parents who fought so hard for it.
“But the impact and feeling that was on the Senate floor and House of Representative floor on Thursday was, it was her mission,” Catrina said.
“Only a child could do that for them. To put a face to what it really meant. That’s what really touched everyone’s heart,” Jeff said.
Gov. Herbert has indicated he will sign off on the new law. It is expected to go into effect in July.
Also, on June 29, there will be a motorcycle ride to raise money for Batten disease and to honor Charlee’s memory. Learn more about the event by visiting charleesangels.org.