For years, Sarah Wilkinson woke up every day wondering if it would be her daughter's last.
When she was a baby, Mia was diagnosed with a form of epilepsy that caused her to suffer waves of intense seizures — sometimes up to 100 episodes in one day.
To make matters worse, the dozens of pills Mia's doctor had prescribed for her condition weren't working and she was miserable all the time.
"She sometimes had seizures that would last up to 23 hours and she would have to be put into a medically-induced coma," recalls Wilkinson, who lives with her family outside of Calgary, Alberta. "And whenever she would have a big seizure, my two sons would start panicking because she would be turning blue."
That all changed two years ago, when Wilkinson found a doctor at the Alberta Children's Hospital who agreed to sign off on a medical marijuana prescription for Mia. In Canada, it's doctors who are the gatekeepers for this treatment, even though marijuana is not recognized by the federal government as a valid medicine.
Wilkinson started turning the dry buds into oil and giving it to Mia orally through a dropper. Even though ingesting medical marijuana this way was illegal in Canada until last month, she didn't want her child smoking it.
Within a few short months, Mia stopped having seizures altogether and eventually went off the pills. It was like a miracle cure, said Wilkinson. For the first time in her life, Mia, who is now nine, could go camping with her family and watch her brothers' hockey games without fear of seizing or being in pain.
"It's given us our life back. It's allowed for a little bit of normalcy, and a lot more freedom," said Wilkinson.
But last month, Wilkinson was devastated when her doctor refused to renew Mia's annual prescription because of the hospital policy that discourages medical marijuana treatment. "Due to the strict nature of the policy implemented here at Children's, I am not allowed to fill the forms for renewal of medical marijuana," the doctor wrote in an email to Wilkinson.
Now, Wilkinson once again joins many other families across the country who have to go to great lengths, even traveling across the country, to find a willing doctor to vouch for their child's prescription. She has enough cannabis to tide Mia over for three more weeks. But if she doesn't find a doctor by then, she has no problem resorting to illegal means to get it.
And she's not alone.
"You have to go out there and find people who can give you what you need," said Kendra Myhre, another mother in Alberta who was able to find a supplier for her toddler when her doctor refused to write a prescription. "You'd be amazed at the networking parents can do when they have children with such a fatal disability, and the ends they are willing to go to for their children," she told VICE News.
It's cases like these that show the cracks that remain in Canada's liberal medical marijuana regime and the hurdles licensed patients — especially children — still have to overcome when doctors hesitate to prescribe a treatment that isn't supported by the health bodies that regulate them.
The federal government says there isn't enough medical evidence to support the efficacy of marijuana as a treatment, but Canada's courts have ruled that Canadians should have access to it for medical reasons anyway. Most recently, the Supreme Court of Canada ruled patients could consume their medical cannabis however they choose. This has led to a situation where Health Canada has, begrudgingly, set up a system for licensed distributors to supply weed for people with prescriptions.
Adam Greenblatt, executive director at Santé Cannabis, a private medical marijuana clinic that opened last year in Quebec, says his clinic has about a dozen children patients with epilepsy, most of whom are from outside of the province. But even among the seven doctors who provide medical marijuana treatment there, not all of them will provide the treatment to children. And he often hears stories from families whose doctors and specialists will refuse to even refer them to another doctor who would sign off on a prescription.
"Medical marijuana, for any reason, is already very controversial in the medical field, let alone for very young patients. When you add the factor of an extremely young patient, it can scare a lot of doctors off," he told VICE News. "Cannabis is not an approved substance by Health Canada, it hasn't gone through the same trials that pharmaceutical medications have, and that's why a lot of physicians have a lot of trepidation."
Greenblatt says there is a dearth of medical evidence about the effectiveness of medical marijuana for children with epilepsy, but preliminary evidence from clinical trials is promising. He points to Dr. Orrin Devinksy's ongoing research at New York University's Langone Comprehensive Epilepsy Center on treating children with severe epilepsy with liquid extract from marijuana (cannabidiol or CBD).
Within the last year, several US states such as Kentucky and Florida have legalized the substance, even though the scientific evidence is pending, and another nine states are mulling over legislation that would make it legal. In many cases, legislation is named after children who treat their illnesses with cannabis in oil form.
In April, Devinsky released a study of early results from his research that showed a significant decrease in the number of seizures among epileptic patients who took cannabidiol orally everyday. Of the 137 patients, the average age of whom was 11, who completed the 12-week study, the number of seizures they experienced decreased by more than 50 percent.
Researchers at Sick Kids Hospital in Toronto, Ontario are applying to Health Canada to undertake an initial study on the safety and dosage of cannabidiol used by children with epilepsy who are resistant to other treatments. A spokesperson for Sick Kids told VICE News that this would be the first study of its kind in Canada and "there is great interest in the potential of cannabinoids in treating seizures."
It's still too early to say that the treatment has been scientifically proven, but Greenblatt says he's seen it work first hand. "Certainly the anecdotal evidence is strong and compelling," he said. "And by the time these patients come to us, they're usually at the end of their ropes, so it's absolutely a life or death situation and if they have to discontinue therapy, it does put their lives in jeopardy."
Many parents with sick children are willing to risk it all if they believe medical cannabis works.
When Kendra Myhre couldn't get a medical marijuana prescription for her two-year-old son, Zayden, who has Dravet syndrome, a fatal seizure condition, she still found ways to get the weed and didn't let the prospect of criminal charges get in her way. She turned to medical marijuana last June after Zayden suffered such a bad seizure that he could no longer crawl or hold his head up on his own. "That was the breaking point for me," she said. "Clearly all the pills he was taking weren't working well."
This week, Myhre finally found a doctor willing to write a prescription. She no longer lives in fear of getting caught. "We didn't want to see him suffer and put him in a casket before the age of five. We wanted to give him the best possible life for as long as he's got, which probably won't be long," she said.
But other families she knows aren't so lucky. Myhre told VICE News about an informal network of parents in Alberta who give medical marijuana to their children without a prescription and share information about their sources. "There's so much grey area right now that they are terrified to come forward," she said.
Myhre says Zayden still takes two types of pills in addition to the medical marijuana oil, but he has been seizure-free for a month. "It's a combination of these things that, for us, has saved his life."
As for Wilkinson, she has appealed Mia's prescription denial to the ethics board of the Alberta Children's Hospital.
According to a statement from Alberta Health Services, the governing body for health care in the province, it "does not support the prescription of medical marijuana for pediatric patients with epilepsy at this time. Physicians provide prescriptions on a case by case basis using their professional judgment."
But Wilkinson remains hopeful that she, like Myhre, will find a doctor to renew Mia's prescription. "She's my daughter and I'm not willing to see her die because some people are uncomfortable with cannabis as therapy," she said.
Follow Rachel Browne on Twitter: @rp_browne