Pubdate: Wed, 23 Apr 2014
Source: Penticton Herald (CN BC)
Copyright: 2014 The Okanagan Valley Group of Newspapers
Contact:  http://www.pentictonherald.ca/
Details: http://www.mapinc.org/media/664
Author: James Miller
Referenced: Quest For KYLA: https://www.youtube.com/watch?v=l9Pym6GPLUM
Bookmark: http://www.mapinc.org/mmjcn.htm (Cannabis - Medicinal - Canada)

FAMILY PLEADS FOR MARIJUANA FOR THEIR 2-YEAR-OLD

When Chris and Elaine Nuessler became semi-retired after careers in 
policing and business, the last thing they ever imagined being was 
marijuana advocates.

But, unfortunately for this Summerland couple, life dealt them a 
cruel blow when their only granddaughter, Kyla, was born with epilepsy.

Since then, the two-year-old's parents, Jared and Courtney Williams, 
along with the Nuesslers, have been researching, surfing the Internet 
constantly, speaking with experts and building what's unofficially 
known as "Kyla's medical team." They've also discovered a ton of red 
tape along the way.

What they really want for Kyla is medical marijuana.

While the idea of providing a toddler with weed sounds preposterous, 
it's been known to help children in the United States.

Charlotte's Web, as it's commonly known, contains realm oil and 
alepsia, which is never used by recreational drug users because it 
doesn't provide the buzz pot users crave. Named after a little girl 
who suffered a form of epilepsy, using the high CBD and low THC, it 
limited the severity and frequency of her seizures and allowed her to 
develop and enjoy a more normal life.

The problem is that it's still illegal in Canada. Although laws 
changed on April 1, the only form of legalized medical marijuana at 
the moment is dried, meaning Kyla would have to smoke it.

"The laws are so convoluted right now," said Chris. "Everybody's 
interpreting the laws to the way it works for them."

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. The infant had unusual eye movements. She visited a 
pediatrician locally and within 24 hours was rushed to Children's 
Hospital in Vancouver, where she was diagnosed as having retractable 
seizure disorder.

Over the next year, Kyla was placed on a series of prescription drug 
mixtures, received steroid shots and was given a high-fat diet. Some 
of the drugs had brutal side-effects. She was averaging 100 seizures 
per day. Some things worked briefly, but the body becomes immune to 
drugs and the prescription needs to be altered.

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

In March, Kyla's mom and grandmother made a trip to Vancouver and 
received the news they never wanted to hear. Kyla's life expectancy 
would be short. "We both cried all the way home from Vancouver," said Courtney.

The next day, Courtney's 91-year-old grandfather called.

"Did you see that CNN report?" he asked in reference to a detailed 
feature on Charlotte's Web and how it's been known to help children 
who suffer cancer and epilepsy.

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

With Jared working for long periods in Fort McMurray, the Nuesslers 
have become incredibly active in Kyla's life. Courtney, who was 
trained as a health-care aide, is a stay-at-home mom. The Neusslers 
are in the process of selling their home in order to accommodate the 
baby and her parents.

Briefly, they considered moving to Colorado, where the drug is available.

"Our entire support network is here," said Courtney.

Growing the marijuana themselves is not an option because it requires 
detailed chemistry.

They explored the possibility of Kyla being a test case, but that 
would require a doctor quitting a practice and devoting his or her 
life to the project.

Many people have helped the family seek information, and through 
contacts they've spoken to leading experts in the field, including 
Charlotte Figi's (of Charlotte's Web fame) doctor.

Nobody's view on marijuana has changed more than Chris, who was a cop 
for 25 years.

"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," said Chris.

The family agree there's no guarantee the medical marijuana will cure 
Kyla, but they believe it's worth a chance.

"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," said Elaine. "I'm not saying it would be a miracle, but 
even if it alleviated some of her pain, that would be good. It's said 
to work 85 per cent of the time.

"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."

Kyla's story has been set to music and video and may be viewed on 
YouTube at Quest for Kyla.
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MAP posted-by: Jay Bergstrom