Pubdate: Fri, 26 Feb 2016
Source: Penticton Herald (CN BC)
Copyright: 2016 The Okanagan Valley Group of Newspapers
Contact:  http://www.pentictonherald.ca/
Details: http://www.mapinc.org/media/664
Author: Dan Walton
Page: A3

KYLA'S QUEST GOES HOLLYWOOD

An outdated law had to be ignored before four-year-old Kyla Williams 
could have her epilepsy treated with medical marijuana, and while the 
Supreme Court has since struck down that law, her family continues 
their relentless campaign against irrational stigmas.

Their efforts are going as far as this weekend's Academy Awards in Los Angeles.

Kyla's great aunt, Corina Nuessler, is the founder of Corsus Body 
Care, a business that manufactures premium body care products. Bars 
of her soap will be included in gift bags that are designated for 
celebrities and special guests at Sunday's Oscars.

"There's over $200,000 worth of gifts for each movie star, it's kind 
of a big deal," said Kyla's grandmother Elaine Nuessler of Summerland.

Around 150 movie stars, along with their families, are expected to 
drop into a gifting room to pick up their goodies. As the talent 
makes their way through, Corina will have three canvases to collect 
celebrity autographs on.

The signed canvases will then be sold via auction, and the money 
raised will support Kyla's Quest, which helps finance medical 
marijuana for Canadian families in need.

"Kyla's story will be shared with people who are very influential, 
hopefully people who are able to help others through their celebrity 
status," Elaine said.

Corina has invited Realm of Caring to join her table, a 
not-for-profit that supports the research and development of 
cannabinoid therapies. Realm of Caring will be sharing a book that 
features four children who benefit from the use of medical marijuana, 
one being Kyla.

"Realm of Caring educates and helps people understand the science 
behind it," Elaine said.

Without medical marijuana, "I would suspect that Kyla would not be in 
very good shape right now, if at all alive."

Elaine said it's overwhelming how she's found herself advocating the 
use of marijuana.

"I was completely against it to begin with (two years ago). My 
husband is retired RCMP and we've learned so much about this road 
we've had to go down."

Even within the medical community, Elaine said very few doctors 
actually believed cannabis could serve as an effective medicine.

"This is medicine. It's not hokey pokey or potheads just wanting to 
get high - it has nothing to do with that," she said.

The decision to seek out medical marijuana came as a last resort 
after Kyla's family had exhausted all other treatment options.

Few pharmaceutical drugs were even modestly effective for Kyla and 
her body was on the road to rejecting all pharmaceuticals, Elaine 
said. Kyla's body even rejected melatonin. A ketogenic diet, very 
high in fat, temporarily lessened the frequency of Kyla's seizures, 
but the effect waned over time.

As the family was running out of traditional options for treatment, a 
documentary that aired on CNN offered a glimmer of hope. The program 
featured a young girl named Charlotte who was in a similar position 
as Kyla, suffering from hundreds of seizures per day. After testing 
all of the institutional methods with no prevail, Charlotte's family 
was only able to effectively treat her epilepsy once they 
experimented with medical marijuana.

The Williams family decided to take the same route, and Elaine said 
the difference in Kyla's quality of life has been immeasurable since 
beginning the alternative therapy.

A new strain of the plant was developed to address the specific needs 
of people with epilepsy, with its genes manipulated to provide the 
most effective balance of chemical compounds. The strain of marijuana 
was designed to contain a high level of cannabidiol (CBD) and a very 
low amount of tetrahydrocannabinol (THC). It does not offer the 
psychoactive high that recreational users often enjoy. Since 
Charlotte was a trailblazer for the treatment, the new strain was 
named Charlotte's Web in her honour.

Elaine said two per cent of the population lives with epilepsy, and 
one-third of those affected can't be helped by pharmaceuticals. Those 
who decide to treat epilepsy with medical marijuana may have to 
experiment with different dosages and variations, but the same 
finetuning practices also apply with pharmaceutical drugs.

Kyla's Quest can be followed online at: 
Medicalcannabisforsickkids.com, which shares her story in detail and 
posts updates via blog.
- ---
MAP posted-by: Jay Bergstrom