Family of child with epilepsy celebrating cannabis oil victory
Published Thursday, October 13, 2016 5:12PM PDT
The family of a little girl who uses cannabis oil to treat her seizures are celebrating a small victory now that Health Canada is allowing them to access the product.
Kyla Williams, a four-year-old living in Summerland, B.C., has intractable epilepsy and used to suffer from more than 300 seizures per day. Doctors told Kyla's parents when she was a toddler that she likely wouldn't last long given the severity of her condition.
"Every time she seizures her brain deteriorates, so she was not given a long life," her mother Courtney told CTV Vancouver's Kent Molgat. The family tried traditional medication, but the drugs didn't help the young girl.
Then they tried Charlotte's Web Hemp Extract, a type of cannabis oil touted by some researchers as an effective treatment for epilepsy. The oil has very low levels of tetrahydrocannabinol (THC), the psychoactive ingredient in marijuana.
The oil has high levels of cannabidiol, a substance that some believe can calm the electrical and chemical activities in the brain.
The version of hemp oil sold by Charlotte's Web costs between US$40 and $275 depending on the size of bottle. It comes in two flavours: olive oil and mint chocolate.
Two years after her family was told she would not live long, Kyla is often seizure free for weeks at a time, progress her family says is due to their use of cannabis oil.
But her family has had to fight to have access to the oil, shipments of which had been seized multiple times by the Canada Border Services Agency because of the country's marijuana laws.
Kyla's grandmother, Elaine Neussler, has been fighting for access to Charlotte's Web for most of the girl's life.
"From the very beginning it's been a complete struggle," she told CTV News.
Now there's a way for the family to get their hands on the substance that calms the girl's seizures. Health Canada is allowing others to access the products, as long as they have an exemption letter to the country's narcotics laws.
"We are extremely happy, and we feel great relief," Neussler said of the decision.
And the family credits their local MP for the change in policy. Stephen Fuhr, MP for Kelowna-Lake Country, said the change is a reflection of a new and more compassionate form of government.
Neussler met with him on Thursday, giving him a hug and telling him she had to thank him.
"At the end of the day, I'm super happy that people get what they need," Fuhr said.
Neussler and her ex-RCMP husband have vowed to have the product delisted as a drug to further improve access for those who rely on it.
"It is ironic," said Chris Neussler, Kyla's grandfather.
"I used to arrest people for the same thing that we're doing. But I will do anything for Kyla and my family."
With files from CTV Vancouver's Kent Molgat and The Canadian Press