Pubdate: Sun, 05 Apr 2015
Source: Edmonton Sun (CN AB)
Copyright: 2015 Canoe Limited Partnership.
Contact: http://www.edmontonsun.com/letter-to-editor
Website: http://www.edmontonsun.com
Details: http://www.mapinc.org/media/135
Author: Kevin Maimann
Page: 2

'I WANT TO SAVE MY SON'

Mom struggles to find legal options to treat ailing child

Monique Guillamot found what appears to be a life-saving cure for her
four-year-old son, but the government says he can't have it.

Her son Keyaan suffers from a rare condition called Dravet Syndrome
and has been on life support four times. Doctors have prescribed large
doses of various pharmaceuticals at increasing doses, but nothing
helped his frequent seizures until a doctor in Luxembourg prescribed
hemp oil in August 2013.

Three days after starting, three of Keyaan's seizure types stopped. As
treatment continued he began to speak more, could go to school longer,
and stopped drooling.

"It was unbelievable, the clinical evolution with the marijuana," said
Guillamot, who now lives in Edmonton with Keyaan.

"It was like his brain was woken up. He was on all these meds, sedated
for so long, and within a month he was like a new child."

Unfortunately, the treatment cost $500 a month, a price Guillamot
could not afford as a single mom with a son who requires
round-the-clock supervision. The Fort McMurray native moved back to
Alberta with Keyaan hoping to find better health care, but the oil her
son needs is still illegal here despite herself and other parents
taking their stories to elected officials.

"I want to save my son, but I'm not going to jail to do it," she said.
"I do not understand why they don't want to help them. It breaks my
heart. It doesn't make sense."

Cannabis plants contain THC and cannabidiol (CBD), the latter of which
scientists believe can calm the excessive electrical and chemical
brain activity that causes seizures. Keyaan needs an oil extract high
in CBD to offer the calming effect without the high.

CBD oil violates Health Canada's Marihuana for Medical Purposes
Regulations that came into effect last April, which only allow
licensed producers sell medical marijuana in dried form to be smoked
or vaporized.

"He's four years old, and you're not supposed to smoke. There's THC,
it's psychoactive," Monique said.

Her options are limited. She could get the oil in Vancouver, where
dispensaries are common and mostly ignored by police, or find a
compassion club to help her with extraction. Both options are
expensive and technically illegal.

Monique has watched her son develop two new seizure types while
doctors keep increasing his meds. He has dozens of seizures every day
and she fears for his life.

"It's very difficult when you have something that can help your son,
and then you have to stop and you just watch them regress again," she
said, choking up.

Supreme Court

Vancouver resident Owen Smith was busted in 2009 for selling baked
goods with cannabis oil, but he took his case to the B.C. Supreme
Court and won in 2012, effectively making the oil legal for medical
purposes.

The federal regulations brought in last April re-opened the case
before the Supreme Court, where the Harper government continues to
wage a costly battle against Smith. A decision is expected in late
summer or early fall.

Health Canada maintains dried marijuana is the only form of the plant
scientifically supported as a treatment. In a statement issued to the
Sun, Health Canada said the decision to pursue authorization for a
substance such as CBD oil lies with manufacturers, who can submit for
clinical trials.

Terry Booth, CEO with Alberta's sole production facility Aurora
Marijuana, sees extraction being allowed in the near future but knows
that's hardly consolation for kids who are currently suffering.

"I really feel for (Monique), because there has been some unbelievable
results with Dravet Syndrome," he said.

The mother of a nine-year-old girl with Dravet Syndrome in New York
successfully fought for state legalization of medical CBD oil last
year, but her daughter died before the law came into effect.

Taken up the fight

In Ottawa, the family of a boy named Liam has taken up the fight, and
in Colorado, where pot is entirely legal, CNN featured a six-year-old
girl who went from having 300 seizures a week to just one after
starting CBD oil.

"It's overwhelming that I live in a country that won't help me save my
son," Monique said.
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MAP posted-by: Matt