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Family wants sick child to get medical pot

By: James Miller, Penticton Herald, The Canadian Press

 | Apr 23, 2014 - 2:19 PM |
PENTICTON, B.C. - When a retired police officer from Summerland, B.C., left his job after 25 years, he hardly imagined fighting for his little granddaughter to be given marijuana.

Chris Nuessler, along his wife and Elaine, wants Canada to allow two-year-old Kyla Williams to be given a form of medical marijuana known to prevent seizures resulting from epilepsy.

The girl's parents, Jared and Courtney Williams, along with the Nuesslers, have been researching medical pot use and speaking with experts to build what they're calling "Kyla's medical team."

They say Kyla has suffered severe side effects from prescription drugs when she could be helped like other children in the United States.

A strain of marijuana commonly called Charlotte's Web has been known to help kids in the U.S., but it's illegal in Canada.

It contains very little THC, which provides the buzz recreational pot users crave, and is mostly made up of CBD, which limits the severity and frequency of seizures.

Named after a little girl named Charlotte Figi who has epilepsy, the weed has allowed her to develop and enjoy a more normal life.

In Canada, the only form of legalized medical marijuana is dried, meaning Kyla would have to smoke it.

Chris Nuessler said his view of marijuana as medicine has radically changed since his policing days.

"For me it was back to the 1980s and 1990s mindset when I was busting people. I had to do a 180 (degree turn) and start researching this."

Kyla appeared to be a healthy, little girl for the first six months of her life until her mother noticed she wasn't progressing at a normal rate and had unusual eye movements.

After she was seen by a pediatrician, Kyla was rushed to BC Children's Hospital in Vancouver, where she was diagnosed with retractable seizure disorder.

Over the next year, the little girl was placed on a series of prescription drug mixtures, received steroid shots and was given a high fat diet.

She even developed a kidney stone. Some of the drugs had brutal side effects and she was averaging 100 seizures a day, her grandparents said.

"The drugs aren't really working and we were told there's really nowhere she can go," Elaine Nuessler said. "She's down to her last drug. She may seizure for the rest of her very short life."

In March, Kyla's mother and grandmother made a trip to Vancouver and were told Kyla's life expectancy would be short.

"We both cried all the way home from Vancouver," Courtney Williams said.

The next day, Courtney's 91-year-old grandfather called to tell her he'd seen a CNN report on Charlotte's Web and how it's been known to help children with cancer and epilepsy.

"Her development was so similar to so many of the kids who have been helped by cannabis," Elaine Nuessler said.

With Kyla's father working for long periods of time in Fort McMurray, the Nuesslers have become incredibly active in Kyla's life and are in the process of selling their home to accommodate the toddler and her parents.

They say they've spoken with leading experts in the field, including Figi's doctor, and have even considered moving to Colorado, where marijuana is available.

"Our entire support network is here," said Courtney Williams, who was trained as a health-care aide.

Growing pot themselves is not an option because it requires detailed chemistry to create Charlotte's Web.

The family said they want to try the marijuana to see how it will work for Kyla and understand that there are no guarantees.

"Why not? It can't be any worse for her than some of the horrible drugs she's been put on and the side effects her little body has had to endure," Elaine Nuessler said.

"Our main thing is access, awareness and acceptance, not only for Kyla but for other children in her situation. In my opinion you should be able to go to your doctor, get a prescription and then go to a pharmacy or dispensary and get exactly what you need." (Penticton Herald)

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