Pubdate: Thu, 18 Aug 2016
Source: Airdrie City View (CN AB)
Copyright: 2016 Airdrie City View Ltd.
Author: Joel Dryden


Like many school-aged children, Sarah Wilkinson's 10-year-old 
daughter, Mia, will head off to school in September. Though today Mia 
is laughing, happy and enjoying life, many didn't expect her to still be here.

With two boys already at home, Wilkinson and her husband James were 
"over the moon" to hear another baby was on the way - a girl. But 29 
minutes after being born, Mia had her first seizure. The diagnosis - 
a rare form of epilepsy called Ohtahara syndrome - meant Mia's life 
would be marked by many more seizures to come.

"It was awful. You're sitting in a room full of specialists, who are 
infinitely smarter than you, and they said, 'There's nothing we can 
do,'" Wilkinson said. "'We can try to ease her symptoms, but 
eventually, this is going to kill her.'

"I had a complete nervous breakdown in the room. I went to her room 
and cuddled and cried and made the decision that as long as she was 
willing to fight, I was going to be in her corner."

Wilkinson worked with doctors to try to control Mia's seizures, but 
prescriptions were of no use. Mia was having multiple seizures 
throughout the day, some of which lasted hours.

According to Wilkinson, when Mia was seven years old, she had a 
23-hour seizure. It took a continual dose of ketamine - or horse 
tranquilizer - and midazolam to stop it.

"They had to fully suppress her and put her in a full medical coma. 
Once everything had settled over the next couple of days, we didn't 
know whether she was going to wake up from it," Wilkinson said. "Her 
neurologist said, 'There's absolutely nothing left for us to do. 
Sometimes, the man upstairs has different plans.'"

After Mia woke up and came home, Wilkinson and James had a discussion.

"My husband said, 'Maybe it's time. What we are doing to her is 
cruel,'" she said. "I thought that, (being) in hospital, every few 
months on ventilators, that's not a way for her to live. I did agree 
with that. I realized that wasn't fair."

But Wilkinson remembered something she had read about cannabis oil 
for children, and decided to try it as a last resort.

"I thought, well, I've got nothing to lose here. I'm already losing 
her. She's dying. I ended up getting the dried flower and learned how 
to make the oil. I don't think I slept for about three months," she 
said. "I wasn't giving it to her under doctor's guidance at all. I 
was so worried, but I was desperate. When a mom feels that 
desperation, they'll do anything."

The cannabis oil started working immediately. Though Mia would have 
more seizures while being weaned off her medication, she had her 
final seizure on Feb. 17, 2014 - and hasn't had one since, according 
to Wilkinson.

"It still feels new to me, even though it's been two and a half 
years," Wilkinson said. "It almost leaves you traumatized. When I 
look back, I don't know how any of us functioned in and out of the 
hospital constantly."

But after years of Mia's successful response to cannabis oil, 
Wilkinson received distressing news - under new policy, Mia's medical 
marijuana policy would not be renewed by the Alberta Children's Hospital.

"I said, 'You're giving my daughter a death sentence right now,'" she 
said. "'This is the only medication that has ever worked for her. Now 
you're telling me not to give it to her?'"

Alberta Health Services would not comment on Wilkinson's story 
specifically, instead providing a statement that stated the 
organization "does not support the prescription of medical marijuana 
for pediatric patients with epilepsy at this time."

"Health Canada has not approved medical marijuana for the 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 statement read.

After her story was picked up by various media outlets, Wilkinson 
received offers of help and was able to secure an alternative source 
of medical marijuana.

"I don't like playing politics with children's lives. This is not a 
political issue, it's a human rights issue. I (shouldn't) have to 
continually justify this morally," Wilkinson said. "I'm just a mom 
and I just wanted to help my daughter. I think we have a lot of 
parents standing up, and a lot of parents are scared to come forward.

"I'm coming to shout this from the rooftops - this has helped my child."
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MAP posted-by: Jay Bergstrom