Nine-month-old Kaitlyn Pogson is the youngest child at The Hospital for Sick Children in Toronto to be diagnosed with Dravet syndrome, a rare form of epilepsy that only affects one in 30,000 children. She may never be able to walk or speak.
Kaitlyn’s mother, Shannon Pogson, says her daughter’s seizures are “terrifying.”
"Every single time she has another one it's almost worse and you're terrified that they're not going to stop because they're so long," she said.
The seizures now last up to an hour. By the time Kaitlyn is a year old, she could be having them constantly.
“(It’s) five or six different types of seizures so she’s going to be either seizing or sleeping,” said father Barry Pogson.
The couple is hoping a strain of marijuana that is low in TCH, the mind-altering ingredient in the plant, and can be administered as an oil, could help to alleviate Kaitlyn's seizures.
"It's worked in so many kids and so much so that there's a waiting list in Colorado to get access to it," said Shannon.
The marijuana strain instead has increased levels of cannabidiol, or CBD, and has been widely studied in the United States.
The medication Kaitlyn is currently taking doesn't provide the same relief it does for other children suffering with Dravet Syndrome, her parents say.
The medication also caused her to stop eating several months ago, forcing Shannon and Barry to feed Kaitlyn through a tube in her stomach.
"We haven't really come across a medication yet that even most of the time brings her out [of her seizures] ," Barry said, noting that every time Kaitlyn has a seizure they call 911.
"A lot of the time she seems to be coming out herself, so even at the ER at SickKids a lot of it is just waiting and hoping that it stops," he said.
The couple is hoping their online petition to Health Canada that has garnered over 2,000 signatures may encourage a clinical study on the low-TCH marijuana in this country..
"It's not something that can be ignored because it could save Kate's life,” Shannon said.
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