Pubdate: Fri, 08 Aug 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: Susan McIver Cited: https://www.youtube.com/watch?v=l9Pym6GPLUM ENDING TODDLER'S SEIZURES MATTERS MORE TO FAMILY THAN COMPLYING WITH DRUG LAWS The family of a two-year-old Summerland girl is willing to break the law to provide her with the cannabis oil that appears to have dramatically reduced the hundreds of seizures she was suffering daily. Kyla Williams, who has a severe seizure disorder, has shown marked improvement during the past five months while her family has been treating her with the illegal oil. The family tried the oil after doctors said they had exhausted their treatment options. "It's a scary place to be," said Kyla's grandmother Elaine Nuessler. Kyla's parents, Jared and Courtney Williams, Elaine and grandfather Chris say they "don't care about repercussions." The urgency of Kyla's situation fuels their lack of concern about legalities. "The seizures themselves and the medications prescribed by the doctors were causing a progressive deterioration," Elaine said. Kyla lost motor skills to the point where she could not even suck her thumb and was becoming less responsive to the world around her. Under the Marijuana for Medical Purposes Regulations, which came into effect April 1, licensed producers can only sell dried marijuana. It is illegal to sell derivative products such as oils or foods made from marijuana. Kyla's family wants to raise public awareness and to help change the regulations. Cannabis oil is high in cannabidiol (CBD), the compound used to treat conditions such as Kyla's, but low in THC, a psychoactive component that is associated with pain relief and which causes the high that's attractive to recreational users of marijuana. "Why derivatives are not allowed is the 64,000-dollar question," said David Hutchinson of The Herbal Clone Bank. Courtney says the doctors associated with Kyla's care understand the family's dilemma. "They basically said 'you gotta do what you gotta do,'" she said. A CNN feature report seen by Kyla's great-grandfather about how cannabis is helping children with epilepsy and other conditions set the family on a search for a source. "This was the day after we'd received the devastating news from doctors that they were down to the last drug and Kyla may seizure for the rest of her very short life," Elaine said. The family quickly located a British Columbia source of cannabis oil. Dramatic results were observed almost immediately after the first dose. "We were astonished and so thankful when Kyla no longer had any seizures or only a very few each day. Her overall condition continues to improve both physically and mentally. Kyla is alert, increasingly socially interactive and loves sucking her thumb," Courtney said. The family then ran into problems associated with the lack of information about characteristics of the many strains of marijuana and the limited quantities available. "When the supply of the first oil was exhausted, we tried oil from four other strains," Elaine said. While reducing seizure numbers and severity, these oils were not as effective as the first oil. "Careful studies are needed to determine the exact composition and concentration of each compound in the various strains and their effectiveness in treatment," Chris said. However, those much-needed studies cannot be done as long as the oils and other derivatives are illegal. Kyla's family decided against moving to Colorado, where the oils are legal and are being used by hundreds of patients. "Our support system is here, and we'd like to help change Canadian laws around the legality of derivatives," Chris said. Their first step was going public in the spring with an interview on Global TV and an article in the Penticton Herald. Since then, Kyla's story has appeared in major Canadian newspapers, in publications as far away as Australia and in medical journals. In early April, the family posted "A Quest for Kyla" on YouTube. "It's critical that people educate themselves about medical marijuana and join in the struggle to have derivatives legalized," Chris said. "As a retired RCMP officer, I had to do a 180 on marijuana after seeing its benefits." Elaine has been astonished by the number of phone calls she continues to receive almost daily from parents of children with seizure disorders. "The calls are coming from across the country. We had no idea the problem was so big," she said. - --- MAP posted-by: Matt