Pubdate: Thu, 24 Apr 2014
Source: Edmonton Journal (CN AB)
Page: A15
Copyright: 2014 The Edmonton Journal
Contact: 
http://www.edmontonjournal.com/opinion/letters/letters-to-the-editor.html
Website: http://www.edmontonjournal.com/
Details: http://www.mapinc.org/media/134
Author: James Miller

FAMILY SEEKS NEW DRUG LAW TO HELP WITH CHILD'S EPILEPSY

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 with his wife, 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 girl named Charlotte Figi who
has epilepsy, the weed has allowed her to develop 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 retractable seizure disorder was diagnosed.

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

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

"Our main thing is access, awareness and acceptance, not only for Kyla
but for other children in her situation," Elaine Nuessler said. 
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