Three years ago, during the darkest time of her life, Airdrie mom Sarah Wilkinson told her two sons to say their goodbyes to their ailing sister Mia.
Then seven years old, Mia had just been revived from the longest seizure of her young life, thanks to a dose of ketamine (a potent drug used as horse tranquilizer, and known as Special K on the street) beyond the maximum allowed for children.
“We came home and my husband and I discussed how we were going to tell our boys,” said Wilkinson, still choking back tears from the memory.
“We sat them down and just said, ‘we’re not going to have her for much longer, so you need to give her as much love as you possibly can.’ ”
That night, as she lay in bed with her husband James, the heartbroken mom thought she’d try one final option in hopes of saving her little girl.
Cannabis oil, she’d read, had shown some promising results for children suffering from epilepsy, and it was that last desperate hope that Wilkinson clung to.
“I wasn’t ready. It didn’t feel like it was time to say goodbye.”
Mia was born with a very rare form of pediatric epilepsy called Ohtahara syndrome, and just 29 minutes after she was born she suffered her first seizure. Thousands upon thousands were to follow.
From childbirth for the first several years of her life, Mia endured as many as 100 seizures per day, taking a daily regimen of anti-seizure medications that left her little more than a zombie, and at one point caused acute liver failure. In most cases, Ohtahara syndrome is fatal within the first two years.
Today, Wilkinson is getting ready to send her nearly 11-year-old daughter to school for the first time this September. Mia’s now also able to say ‘mamma’ while grooving, fittingly, to Lady Gaga’s Born this Way, simple things that seemed unthinkable just three years ago.
Since taking her first dose of cannabis oil in July 2013, Mia has suffered no seizures. While she remains severely disabled, unable to walk or talk, the progress since she began taking the medication, extracted from dried marijuana buds, cooked in a slow cooker and then mixed with coconut oil, has been miraculous.
But even after two years of remarkable turnaround, including being successfully weened off her other medication, Wilkinson was told Mia would no longer be given a prescription for cannabis oil in Alberta.
“I just broke down in tears. It was just a kick to the gut almost,” she said.
After going public on the denial of the life changing medication, Wilkinson was deluged with offers of help. She finally took Mia to a clinic in St. Catharines, Ont., last September where a doctor was more than willing to prescribe cannabis oil.
Wilkinson has since found a doctor at Calgary’s Natural Heath Services clinic, who is able to renew Mia’s prescription, without having her leave the province.
Alberta Health Services didn’t make anyone available to comment on its policy regarding medical cannabis for children, offering a statement instead.
“Alberta Health Services does not support the prescription of medical marijuana for pediatric patients with epilepsy at this time,” reads the statement, the same provided to media a year ago when doctors refused to renew her prescription.
“Health Canada has not approved medical marijuana for treatment of seizures in Canada, and AHS is unaware of any studies, data or recognized epilepsy organizations that recommend or endorse the use of medical marijuana in pediatric patients with epilepsy.”
The family’s very public battle to provide the drug for Mia has made Wilkinson something of a shepherd for other parents desperate to try the medication in hopes it may help their own children suffering from severe epilepsy.
Wilkinson said her hope is Mia and other “trailblazers” will turn the tide against the stigma of cannabis, and recognize the real medical benefits to some users, like little Mia.
“I just wish this would have been a first line treatment for her epilepsy as opposed to a last resort,” she said.
“I think in 20 to 30 years we’ll look back on this as a pretty dark history with cannabis prohibition. You just can’t argue with her medical records when literally nothing else worked.”