Pubdate: Thu, 24 Apr 2014
Source: StarPhoenix, The (CN SN)
Page: C4
Copyright: 2014 The StarPhoenix
Contact: http://www.canada.com/saskatoonstarphoenix/letters.html
Website: http://www.canada.com/saskatoonstarphoenix/
Details: http://www.mapinc.org/media/400
Author: James Miller

FAMILY WITH EPILEPTIC CHILD SEEKS ILLEGAL STRAIN OF WEED

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 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 tot 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,
Alta., 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
Charlotte 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.

"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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