Pubdate: Sun, 27 Apr 2014
Source: Calgary Sun, The (CN AB)
Copyright: 2014 The Calgary Sun
Contact: http://www.calgarysun.com/letter-to-editor
Website: http://www.calgarysun.com/
Details: http://www.mapinc.org/media/67
Author: Michael Platt
Pages: 2-3

IS THIS THE FACE OF A MIRACLE?

Potato chip producers and Grateful Dead fans have always believed, but
a desperate mother in Airdrie, Alta., never thought she'd be calling
marijuana a miracle.

The cries of "mama, mama" from Sarah Wilkinson's living room just
north of Calgary are all she needs to believe ─ that, and seeing
her disabled eight-year-old daughter Mia going from 100 seizures a day
to seven in the past eight months.

"Her first seizure was 29 minutes after birth ─ it was
absolutely terrifying," said Wilkinson.

"From there I was thrust into the world of seizure disorders. At first
I thought it would resolve itself, and then the doctor sat us down and
told us it was terminal."

Mia was born with Ohtahara syndrome, an extremely rare epilepsy
syndrome usually caused by a brain abnormality, and typically fatal
within the first two years of life.

Children who survive longer, like Mia, are severely
disabled.

Their parents can spend years in a desperate search, for something,
anything, to reduce the number and severity of seizures, with the
worst ─ called status seizures ─ lasting as long as 22
hours.

Last July, Wilkinson and her husband James had run out of options, and
after seeing Mia in hospital ICU, fighting back from yet another
brutal seizure and a medically-induced coma, they were ready to give
up.

"Her neurologist had looked at me and said there's nothing else we can
do," said Wilkinson.

"She'd had another status seizure and was in a medically-induced coma
and my husband and I said this is it -- I looked at him and said 'I'm
not doing this to her anymore, it's not fair to her.'"

Having gone through dozens of drugs and procedures, Wilkinson said
there was nowhere else to go, and to keep bringing Mia back from the
brink seemed cruel, even if her life between the awful seizures often
seemed happy.

"She laughs and plays with toys and she absolutely adores Lady Gaga,"
said Wilkinson.

But worsening seizures and no further pharmaceutical options made the
situation hopeless ─ all that was left was marijuana, an herb
that has shown promise for other epileptic patients, but none so young.

Wilkinson didn't really believe in marijuana as medicine ─ "I
assumed people who wanted it just wanted to get high" ─ and
before Mia's breakthrough she only counted herself as an advocate for
hockey and her two older sons: "I was a militant hockey mom, maybe."

But with nothing to lose, she asked anyway.

"There was no way a doctor will prescribe medical marijuana for a
pediatric patient, but we were ready to sign a 'no resuscitation'
order and speak with a palliative team," said Wilkinson.

"So I asked, because it was all that was left. The doctor said, 'We
are at the end of our pharmaceutical rope. Let's do it.'"

Images of a child smoking bud are far from the truth: the pot is
cooked to extract the medicinal agents, then mixed with coconut oil.

Just one day after Mia tasted her first marijuana, there were drastic
changes.

"Within 24 hours her seizures stopped," said Wilkinson. An
electroencephalography test showed the herb had somehow calmed her
raging brain.

"They said her EEG was comparable to someone with a benign form of
epilepsy ─ that's never happened before."

The marijuana miracle is still a mystery.

Mia's doctors want to know which of the roughly 500 compounds in
cannabis is working, and why, but that would require an expensive DNA
test to even get started -- and because she was deemed terminal
shortly after birth, public funding for a genetic breakdown has not
been available.

"We need to find out why. It won't change the course of treatment for
Mia, but it can for hundreds of other children suffering from
intractable seizure disorders," wrote Wilkinson on a GoFundMe page
dedicated to raising cash for that DNA test.

Meanwhile, Mia is happy at home ─ driving her mom
nuts.

Unable to speak at all prior to the prescription for pot, Mia now has
three words in her vocabulary, including "yes," "no" and "mama," plus
she's finally learning to walk.

"She started talking ─ I'm not really liking the 'no,'" laughs
Wilkinson.

"And 'mama' is all I hear anymore. I bawled when I first heard it."
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MAP posted-by: Matt