Pubdate: Wed, 02 Apr 2014
Source: Airdrie Echo (CN AB)
Copyright: 2014 Osprey Media
Contact: http://www.airdrieecho.com/letters
Website: http://www.airdrieecho.com/
Details: http://www.mapinc.org/media/1558
Author: Dawn Smith

MARIJUANA GIVES GIRL SECOND CHANCE

Like many eight year olds, Airdrie's Mia Wilkinson likes chocolate,
Lady Gaga and the cartoon Phineas and Ferb.

But Mia is anything but average.

The little girl has never walked, never attended school and just
recently started saying "mom."

According to her mother, Sarah, Mia had her first seizure when she was
just 29 minutes old and was diagnosed with atypical Odahara syndrome.

Also known as Early Infantile Epileptic Encephalopathy with
Burst-Suppression (EIEE), Odahara is a progressive epileptic
encephalopathy seen outwardly with tonic spasms and partial seizures.

The disorder as an extremely debilitating progressive neurological
disorder, and until last summer, Mia's parents and two older brothers
had little hope that the girl would make it to her teens, due to her
daily seizures, which sometimes lasted as long as 22 hours.

"Conservatively she had between 50 and 100 seizures per day," said
Mia's mom Sarah, explaining her daughter's seizures sometimes required
hospitalization and a cocktail of powerful pharmaceuticals such as
ketamime and medazepam.

Those drugs, said Sarah, had "horrific side effects" and last summer
led to kidney failure.

"I was ready to let her go, because I couldn't continue to do it to
her," said a visibly emotional Sarah.

She explained she realized that medical intervention was keeping Mia
alive, but with constant pain and no quality of life.

Desperate for a solution, Sarah asked Mia's neurologist at the Alberta
Children's Hospital to prescribe cannibas oil as a last ditch effort.

The doctor, who remains unidentified, agreed to give medical marijuana
a try.

"He said, 'let's give it a shot,'" said Sarah. "We were at the end of
our pharmaceutical rope."

The result after just a few treatments was astounding.

When given the oral cannabis oil mixed with coconut oil, Mia stopped
seizing and almost immediately got off her pharmaceuticals.

Sarah says she has only had about seven seizures in the past eight
months.

Mia is now using several words, recently had surgery to correct her
club feet and will soon be getting a walker.

"This has been our miracle drug," said Sarah. "It saved her
life."

Now the mother is on a mission to help other children get access to
the medication they need.

And there is only one thing standing in her way. Because Mia is
considered terminal, Health Canada will not pay for genetic testing.

That means there is no scientific evidence as to why the cannabis oil
is working and the knowledge can't be applied to similar pediatric
cases.

"It works for her, but we don't know exactly why, so that is why we
need the test," said Sarah.

But that blood test, which will likely be sent to the Centers for
Disease Control in Atlanta, costs between $8,000 and $10,000 - it's
too much for the family to afford.

That's why Sarah has started a fundraiser for the test, which she
hopes will spark a clinical trial for cannabis oil in children with
similar symptoms.

Family friend Chantelle Powers, who has witnessed a number of seizures
as well as Mia's incredible turn around, explained the importance of
the genetic testing and clinical trial.

"Right now there is nothing to go on," she said.

"There is no research for the positive outcome, the negative outcome
or no outcome at all. (Medical marijuana) needs to be accessible to
other children as well."

Sarah agreed, adding she is compelled to advocate for other
children.

"If this was just about Mia, I would shut my mouth and stay out of the
spotlight," she said.

"I'm a huge advocate, not for medical marijuana, but for children.
Medical marijuana is a drug and I am advocating for the kids who don't
have access. Every child should have a chance for a good quality of
life."  
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MAP posted-by: Jo-D