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(Francisco Kjolseth | The Salt Lake Tribune) Catrina Nelson of West Jordan holds her daughter Charlee, 6, who suffered from Late Infant Batten Disease, a terminal inherited disorder of the nervous system that leads to seizures and loss of vision and motor skills. Her daughter, who was on hospice care at home,was been surrounded by friends and family as they comforted one another during her final moments.
Parents grieve dying 6-year-old, a candidate for cannabis

Utah family says its goodbyes while praying for legislation to get cannabis oil to seizure-stricken kids.

First Published Mar 11 2014 01:01 am • Last Updated Mar 11 2014 07:27 pm

West Jordan • No longer needed, an oxygen tank sits idle on the living room floor. Nearby is a box of purple bracelets that Charlee Nelson’s family made to raise awareness of Batten Disease and to collect donations to cover the 6-year-old’s medical costs.

Across the room, hanging from the stroller Catrina and Jeff Nelson had to buy for their once active, gregarious child is a burial dress.

Interactive graphic: Utah kids with epilepsy await cannabis oil

At a glance

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.

To donate

For information on how to donate to help the Nelsons cover their daughter’s medical costs, vist: http://www.charleesangels.org

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"My [oldest] daughter was recently baptized and we were shopping for her when I saw this and thought, ‘This is the dress we have to get [for Charlee]. It’s the wedding dress she’ll never get to wear,’ " Catrina said, fingering the white, satin gown.

Three years ago Charlee Nelson was singing the ABCs and waving to strangers on grocery store outings with her mom. Family movies show her fearlessly plunging into the swimming pool, dancing with her older brother and sister and making silly faces for the camera.

Today she is blind, bedridden and near death.

"She’s hanging on, but she’s not doing too well," Catrina says, cradling her nearly lifeless "baby" girl on the living room couch.

Charlee is among 50 Utah children on a waiting list for a nonintoxicating cannabis oil shown to quell seizures in children with untreatable epilepsy. Utah lawmakers are debating a bill, HB105, that would allow families to import the oil from Colorado where marijuana is legal and the "hemp supplement" is produced.

The bill rests in the Senate and from there needs only Gov. Gary Herbert’s signature before becoming law.

But Senate leaders are considering placing more restrictions on the bill that could impede access to the oil, families say. "We’re working through their concerns," said an optimistic Jennifer May, the mother of a boy with Dravet syndrome and founder of the grass-roots group, Hope 4 Children with Epilepsy.

Whatever legislative fix lawmakers settle on will come too late for Charlee.

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"We would have loved to try [the oil]," Catrina said. "But I’m still hopeful it will give these other kids a more normal life, that it will take away the pain and seizing and let them sing, dance and ride bikes again."

Charlee has Batten disease, a rare neurological disorder occurring in fewer than four of 100,000 births in the United States.

She lacks an enzyme needed to remove fatty waste from the cells of her brain, eyes, skin and muscles. The accumulating waste leads to seizures, mental impairment, blindness, loss of bodily control and eventually death — a fate cannabis oil can’t change.

There is no cure, said Catrina, who nevertheless wonders whether the oil might have kept the brain-damaging seizures at bay, prolonging and improving her daughter’s quality of life. "We lost a lot of time diagnosing and treating her atonic seizures. Time is what it might have bought us. That’s what it kind of boils down to, time."

Charlee’s first seizure was in May 2011.

Nelson and her husband, Jeff, had flown to Colorado for a [niece’s] graduation. They had just landed and were grabbing lunch at Popeye’s when Nelson’s sister-in-law called to say Charlee had a seizure and had been taken to the hospital by ambulance.

"We just looked at each other and both of us started to sob," Catrina recalled.

Doctors initially thought it was an isolated event but scheduled testing a week later to be sure.

While waiting in her hospital room, Charlee froze and stared at the wall, then fell to the ground. "That was the first seizure I had seen. I broke down and thought, ‘This isn’t happening,’ " Catrina recalled.

For six months they treated Charlee for epilepsy. But when she started tripping on the stairs and having recurrent tremors and shakes, the family renewed testing and discovered a part of her brain was shrinking.

Charlee started having drop, or atonic, seizures, sometimes as many as 200 or 500 a day. "She would just cry for hours at a time. She couldn’t communicate or tell us if it hurt but I just know she was in pain," Catrina said.

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