Girl who helped inspire new cannabis oil law dies

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.

20 comments

  • jeff

    RIP Little Charlee Nelson it was your inspiring effort to make a Nation see just how important Legalizing Marijuana would be in helping countless others in the pain and suffering they go through. May you fly in heaven,rejoice and sing. We shall Keep the fight strong and loud so you shall hear, knowing your life is never in vain. Rest in Peace little angel rest in peace.

  • caliboss

    the greatest plant in the universe is almost free, LET FREEDOM RING!!!13

    the people on earth didn’t want to help her, God will

    “any doctor against marijuana is a doctor of death” – cali secret 420

    from 0 states to half the country, from low 20% approval to almost 70%, cali runs this planet by 2 decades, time to tie marijuana to the 2014, 2016 elections, out with the old, in with the new

    20 years behind us southern states, sad and scary….nobody denies freedoms like the south, nobody…the top ten incarcerators on the planet are southern states…even if marijuana reforms did pass the republiCANTS in charge would deny you all your freedoms, centuries of practice…no matter though, we never planned on getting your backwards brethren from day one, half the country already but not one southern state, lol…not 1…. I gave you 20 years, now it’s my turn, watch and learn

    Deaths by Alcohol and Tobacco: Millions
    Deaths by Prescription Drugs: Quadrupled in last decade
    Deaths by Marijuana: 0, ever…..they are killing us legally while denying freedom

    love and freedom forever

    AMERICA’S WAR ON DRUGS IS A WAR ON\ AMERICANS!!!33

  • David Just Koenig

    Rest in peace. The life you had on this planet will not be forgotten. You suffering will be a driving force to be reckoned with. The fear will remain until the day comes where we find the answers. The movement has begun.

  • nic

    whats next they finally prove marijuanna cures cancer then utah delays it beacuase of its ignorence and thousands more die. oh wait that has already happend

  • Marianna Cathryn Glenday, MPH, MA

    If I were there I would give Charlee a standing ovation as she took her last breath. Job well done sweet one it is time and you are home.

  • Howard Park

    My neice, Caroline, who lives in Missouri, has Betten disease and has recently lost her eyesight and is not able to walk anymore. It’s so good to see than Utah now has compassion for little angels like Charlee. I wish Missouri legislators would wake up to the suffering of these kids and the well documented possibilities of marijuana. Charlee is an inspiration to others far beyond Utah’s borders. Caroline needs hope too.

  • martina

    I am here to share my experience with Dr Raymond cannabis oil with you,i was diagnosed with breast Cancer for close to 2 years i have been in struggling to get a permanent cure but could not get any,i have use some one’s cannabis oil but it did not work.It was faithful day i was in the hospital to do my normal check up then on my way home i was on a discussion with a friend i met on the walk way she then ask me how was my family and what brought me to the hospital i then told her every thing with tears on my eyes and she was touched and she told me she could be of help to me that there is this Doctor that has a very good and active cannabis that has the power to cure every cancer,she then further told me that she had cancer on her leg some times ago that it was Dr Raymond cannabis oil that brought her back to life and she don’t feel any pain again,she gave me Dr Raymond Wallace contact i contacted him and after some little stress it was was delivered to me in my country USA in less than five days.To cut my story short i applied it as he explained and glory be to God today i am completely healed by Dr Raymond cannabis oil and i am glad to let the whole world know this good man and contact him for help through his email dr.raymondcannabisoil(at)hotmail(dot)com

  • martina

    I am here to share my experience with Dr Raymond cannabis oil with you all,i was diagnosed with breast Cancer for close to 2 years i have been in struggling to get a permanent cure but could not get any,i have use some one’s cannabis oil but it did not work.It was faithful day i was in the hospital to do my normal check up then on my way home i was on a discussion with a friend i met on the walk way she then ask me how was my family and what brought me to the hospital i then told her every thing with tears on my eyes and she was touched and she told me she could be of help to me that there is this Doctor that has a very good and active cannabis that has the power to cure every cancer,she then further told me that she had cancer on her leg some times ago that it was Dr Raymond cannabis oil that brought her back to life and she don’t feel any pain again,she gave me Dr Raymond Wallace contact i contacted him and after some little stress it was was delivered to me in my country USA in less than five days.To cut my story short i applied it as he explained and glory be to God today i am completely healed by Dr Raymond cannabis oil and i am glad to let the whole world know this good man and contact him for help through his email:dr.raymondcannabisoil(at)hotmail(dot)com)

  • A Ste Bunches

    Leaving snarky comments on a story talking about the death of a child doesn’t make you a morally superior person either. Marijuana wasn’t supposed to save her, but rather give her some relief of symptoms. But hey, why wish some ease and comfort for a dying child when you have a moral high horse all saddled up and ready to ride, hmm?

  • malcolmkyle

    You didn’t allow her to use it. In fact, you helped to kill her by supporting the prohibition of the only real medicine that would have helped keep her alive.

  • Juli Cox

    rough one to hear. I also had a son die based to seizures. He had other troubles but this was hard to watch daily. My seizures continue to increase. It gets worse and worse but I am 49 so it doesn’t appear I will be considered right now. This is terrible. I had hope when I heard this was coming. I thought maybe a medication that had not been tried for me might help. I really need to be considered for a trial basis. I am ready and willing.

  • MQB3

    Actually, I publicly opposed the prohibition of anything harmless. But it didn’t do any good, either, which I also predicted.

    I don’t blame them for trying. Snake oil is worth a shot, when nothing else works.

  • Cameron M.

    Juli, I realize all the articles say this new law will “help children,” but there is no age provision in the legislation. If you have intractable epilepsy, don’t hesitate to talk with your neurologist! This is NOT a “kids-only” deal.

  • Cameron M.

    MQB3, what in the world are you talking about? This family DID NOT try this treatment on their little girl, because it was *illegal.* Fortunately, it is no longer against Utah law, but the change came too late for Charlee. Please, please do some research – check CNN, at the very least! – before making a ridiculous statement about “snake oil.” Quite to the contrary, cannabis oil has been proven to be very effective in the treatment of severe epilepsy, which is why the Utah Medical Association and all of the best neurologists (The Head of Pediatric Neurology at the University of Utah School of Medicine and PCMC – Dr. Francis Filloux – argued fervently in support, for example) in the state supported this bill.

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