Charlotte’s Web. That is the strain of medical marijuana two-year-old Kyla Williams needs. Her family wants her to have access to it to treat her epilepsy.
Unfortunately it is only available in Colorado.
Kyla’s parents, Jared and Courtney Williams, and her grandparents, Chris and Elaine Nuessler, watched a CNN documentary called Weed, about this special hybrid marijuana plant.
It is high in cannabidiol (CBD) content with very little tetrahydrocannabinol (THC).
It does not induce the psychoactive high typically associated with marijuana.
The plant is processed into a very concentrated oil. It has been named after Charlotte Figi, who experienced a reduction of her epileptic seizures after her first dose of this oil, at the age of five.
“We don’t have Charlotte’s Web in Canada and Colorado can’t export it. In order to get the oil you have to be a resident of Colorado,” said Elaine.
“The last time we came home from Children’s Hospital we had devastating news that it was the end of the line with drugs for Kyla. We just know we have no other choice and we are looking for access. I call it my three A’s, awareness, acceptance and access.”
Kyla had not responded well to any of the traditional medications for epilepsy. She also faced other medical complications due to the side effects of these drugs.
As a stop gap measure for Kyla, the Nuesslers explained that they have been juicing marijuana leaves in a low heat juicer.
Legally in Canada they are able to purchase dried leaf from a licensed medical marijuana dispensary and then take it home and use it in whatever way they wish.
For Kyla the leaves had to be juiced in a slow, low rotation juicer so as not to create any heat, because it is through heat that the THC is released from the leaves.
The family’s goal was for her to receive the benefits of the cannabidiol without the high-inducing THC.
“We saw some really positive things for Kyla with the juicing. She was looking right into our eyes. She was happy and playing. She was trying to do things. It was like a miracle,” Elaine said.
The down side was that Kyla was still experiencing seizures. The family believes that the cannabidiol content in the marijuana leaves they had been juicing is not high enough or concentrated enough.
“We want the oil,” Chris said. “I want a lifeline for Kyla. That’s what I’m interested in.”
Kyla’s mother Courtney said she has watched many documentaries and done much research. She is concerned about trying to treat her daughter within the confines of the law and with medical supervision.
She realizes there must be more clinical trials, but added, “the side effects of marijuana are way less than the ones from the drugs Kyla has been on.”
Chris said, “This is not just something we have put out there. We have one heck of a team.”
Dr. Alan Shackelford, who is Charlotte Figi’s doctor and who works with hundreds of other children in Colorado, is consulting and working with Kyla’s doctors locally, as well as with the dispensary in Victoria.
“Everyone is working together. These people know more than we ever could imagine. Everyone is working towards a legal solution to our problem.”
As a retired member of the RCMP, Chris was concerned about public opinion.
“When we became public with this whole thing we said we have to be aware that there may be feedback from this; negative and positive. We haven’t heard anything…absolutely nothing negative,” he said.
The family has received much support.
“If this helps Kyla I will be one of the biggest advocates,” Chris said. “This is the tip of the iceberg I think. It’s coming whether the politicians want it or not. If any one of us gets sick with some sort of severe ailment, one of the first things I’ll be looking at is medical marijuana,” Chris said.
A video called Grandma’s Quest for Kyla can be viewed on YouTube.
If you know a positive story about someone in our community, contact Carla McLeod at carlamcleod@shaw.ca or contact the Summerland Review newsroom at 250-494-5406.
