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The family tried numerous medicines and a high-fat, ketogenic diet, recommended for nearly all children with seizures.
Because doctors had not yet diagnosed Charlee, they didn’t realize fats were the enemy.
Interactive graphic: Utah kids with epilepsy await cannabis oil
Cannabis for kids
Moved by the plight of children such as Charlee, lawmakers largely have supported allowing their compassionate use of nonintoxicating cannabis oil, but they remain concerned the oil may be abused.
HB105 would give families trial access to the oil under the auspices of research. Only those with intractable epilepsy and written permission from a board-certified neurologist could apply to the Utah Department of Health for a waiver giving them permission to import cannabis oil.
The oil would have to be certified to contain at least 15 percent cannabidiol (CBD), the chemical believed to have anti-seizure properties, and less than 0.3 percent of tetrahydrocannabinol, or THC, the psychoactive chemical that gives marijuana users a high.
Plus, the bill was amended to expire in two years, allowing lawmakers to test its results.
The Senate is expected to amend the bill again to require the health department to work with law enforcement officials to ensure waivers aren’t easily forged. In addition, neurologists would have to send their written permission to health officials electronically to avoid fraudulent recommendations.
For information on how to donate to help the Nelsons cover their daughter’s medical costs, vist: http://www.charleesangels.org
"She was potty trained but days after starting the diet was wetting her pants," Catrina said. "We thought, ‘Gosh this seems like it’s making her worse,’ but we felt it was our last hope."
Charlee’s eye doctor first noticed the retinal formations that led to her genetically confirmed diagnosis of Batten disease 21 months after her first seizure. By then Charlee could no longer walk or talk and was nearly blind.
For her the worst part was over — all the blood tests, spinal taps, skin biopsies and brain monitoring.
"She never seemed like she knew something serious was going on because her brain was more like a baby’s by the time it got really bad. She never feared losing her life, which is a blessing I guess," Catrina said. "In a way it feels like we lost her two years ago."
Still, the family resolved to make her final moments count.
Last April the Make-A-Wish Foundation flew them to Disney World. "She loved the thrill ride, Splash Mountain, because even though she couldn’t see, she could feel the motion in her tummy. She was grinning the whole time," Catrina said.
Family and friends have an open invitation to drop by the house.
"I just wanted them to not have regrets and to be able to come and hold her and say their goodbyes," she said.
Neighbors and members of their LDS church — all "Charlee’s Angels" — have donated studio-quality family portraits, an oil painting of Charlee before the seizures, therapeutic massages and food.
Then, in February, she stopped eating and had to be admitted to the hospital.
"Her vitals have declined in the last couple of weeks," reads a Feb. 27 Facebook post by Catrina. "Jeff and I have had an emotional week. We’ve had a lot of hard talks and hard decisions to make."
Charlee worsened. Her brain stopped communicating with her body and now all the family can do is keep her sedated and comfortable.
On March 4 she smiled when told she could leave the hospital and go home.
She still perks up when she hears her mom’s voice. A favorite plush bear that sings the ABC’s when you squeeze can coax a smile.
"She’s an amazing little girl," Catrina said.
Last Thursday the family summoned close friends and relatives. Charlee’s breathing had become shallow. She was gasping for air, looking up at the ceiling and reaching toward something. "I put the oxygen on her and called my husband and said, ‘You have to come home. I think we’re losing her.’ "
She has held on, though, and on Monday lay on the couch, wrapped in her favorite purple blanket with her siblings as they watched TV and played video games.
If she needs oxygen again "we won’t be giving it to her," Catrina said through tears.
She has been honest with her children about Charlee’s prognosis but tries to keep "things light."Next Page >
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