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Kyla Nuessler, 4 years old was born with intractable epilepsy; it is the type that cannot be controlled with any pharmaceutical drug. She used to have up to 300 seizures a day and no matter how the family had tried, any real relief from it all just seemed so far out of reach. That is until they discovered Charlotte’s Web; Charlotte’s Web is cannabis based oil that bought all of her seizures down to just one a week.
The oil was created in Colorado and they usually had it delivered to their doorstep but one day in February it didn’t show up. The Canada Border Services Agency had seized it. This left the family with only one month’s supply left. Elaine Nuessler, who is Kyla’s grandmother, and several other dependant families are now demanding that it be allowed to come into the country.
Nuessler said "We know legalization is coming, but it's not soon enough for this product," She had travelled from Summerland BC to the US production facility for a week to do some research on it.
The oil Charlotte’s Web had been produced by medical marijuana pioneers, the Stanley brothers. It is a high cannabidiol (CBD) and low THC creation, and is a draw for several parents who decide to use the product as treatment for children which suffer from epilepsy because it has the high CBD levels and that is the key to helping them with the seizures without getting the children stoned.
A statement was made by the CBSA and it said "illegal to import or export drugs including marijuana and its derivatives, whether medicinal or not." They couldn't confirm how many shipments had been held, however, explaining that only statistics about all marijuana seizures were available, and that their systems "do not differentiate between types."
The Nuessler family have said they know around 20 other families who are still awaiting their orders, and more families are starting to come forward. The grandmother has been very vocal when it comes to talking about taking CBD Oil off of Canadas list of scheduled drugs.
One of those families is Kim Turkington's family, they have a 6 year old little girl named Ella and she has been using Charlotte’s Web alongside Valproic acid and Rufinamide to treat the intractable epilepsy, autism and encephalopathy. Since the Turkington's family have begun using Charlotte’s Web they have managed to reduce the amount of Valproic acid taken. Ella functions at the cognitive level of a 2 year old, and is now far more alert. Also since they began to use the oil back in January they have seen a significant increase in Ella's brain activity.
Kimberly Turkington said "Our neuro is thrilled, to say the least, She is afraid if she can't get access to Charlotte's Web before her supply runs out, her daughter's seizures will increase from one to two a day to hundreds, and that she will regress and become a zombie and non-verbal."
"It scares me to my core," she said. "I don't want to end up in hospital with my kid cause of stupid politics." Turkington said.
'I don't want to end up in hospital with my kid cause of stupid politics.'
Not everyone in the cannabis community feels the same though. Nuessler has said that she had been bombarded with messages and phone calls from real licensed producers of cannabis in Canada on Wednesday morning and they’ve said they believe she should be using the Canadian product.
"I'm a little person with a granddaughter who is suffering and I have all these children in my heart," then added that the medical marijuana industry as a whole should be working together as a tea to create the products and make them readily more available instead of them competing against each other.
The Nuessler family have experimented with Canadian cannabis treatment some time before they had stumbled upon Charlotte’s Web, and they had found that the oils were too thick which made it extremely difficult to dose and that the results from them were just very inconsistent.
"For Kyla, it's detrimental," she continued. She said she's wary of transitioning Kyla to another product because she's grown accustomed to a high CBD intake that's not available in Canadian cannabis oils. "I know there's other product out there, but if we switch a really sensitive child onto something else, she's going to have seizures, and we're scared to death to go that route."
A spokesman for Charlotte’s Web makers CW Botanicals, Ryan Kingsbury had said that the company aren’t particularly worried about it being held up at the border and it hasn’t experienced any significant level of discrimination from any Canadian regulatory agency.
He said "For Kyla, it's detrimental," she continued. She said she's wary of transitioning Kyla to another product because she's grown accustomed to a high CBD intake that's not available in Canadian cannabis oils. "I know there's other product out there, but if we switch a really sensitive child onto something else, she's going to have seizures, and we're scared to death to go that route." and he maintained that Charlotte’s Web, which has been marketed in the US as a hemp based dietary supplement with a low THC level, is just as legal as all of the other hemp foods and oils which are being sold in Canada, which contained unregulated amounts of CBD, but CBD is a scheduled substance and remains illegal , as the director of Montreal's first cannaboid Santé Cannabis, Adam Greenblatt pointed out.
‘Parents are taking a big risk by importing it from the States.'
While Greenblatt had said he strongly agrees that the hemp industry in Canada needs to be deregulated, and that hemp farmers should be able to start extracting CBD en masse because the stuff works and it is much safer for pretty much anyone to take and that he is however concerned about the confusion over the whether or not it is legal to import.
"Parents are taking a big risk by importing it from the States, and it's not just a legal risk, but a risk for their kids," said Greenblatt and added that his heart really goes out to the Nuesslers, as he has seen patients in his clinic go through similar situations.
"If you need a stable and consistent supply of a medicine, you really should be obtaining it from legal avenues." he said.
He also acknowledges that there’s nothing in Canada that has a high CBD like Charlotte’s Web but says it is just a matter of time before it does become available.
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