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.”
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