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A mother’s quest for an anti-epileptic medicine

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(image accompanies this VIDEO and fundraising campaign)

Earlier this year I had the pleasure of interviewing Cheryl T Rose on my bi-weekly segment on Time4Hemp radio. Cheryl is the mother of Hayley Rose, one of the oldest and highest functioning survivors of Lennox-Gastaut Syndrome (LGS), a rare and severe form of epilepsy that causes multiple types of seizures, and delays cognitive and behavioral development. Cheryl is one of a chorus of parents who are desperately seeking to expedite cannabis policy shift, as their children risk suffering severe developmental setbacks from their continuous seizures. After trying over 22 different anti-epileptic medications and still having up to 40 seizures per day Hayley finally found relief in a cannabis cafe in Vancouver by using a vaporizer.

Since 2008 Hayley has used medical cannabis to reduce her seizure activity dramatically and allow her to live a functioning lifestyle. Cheryl is concerned that the cannabis provided by Licensed Producers will be inadequate to treat her daughters condition. After trying other CBD cultivars with limited success, Hayley found one in particular was successful in treating her seizures. Hayley’s Comet is a patented cultivar with a 1:1 THC:CBD ratio that was found, tested and continues to be researched by Dr. Paul Hornby in Vancouver with the intention of making it available to all patients. Licensed producers now offer cultivars with a similar cannabinoid profile but Cheryl and Hayley, like many other sick patients, simply cannot afford to purchase their medicine at current prices.

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(Cheryl T Rose and her daughter Hayley Rose outside East Vancouver MP Libby Davies office)

Fortunately, Hayley has retained access to her personal source of cannabis through the MMAR Coalition injunction which allows her to produce at a low cost and maximize the yield by making a decarboxylated and concentrated cannabis oil which she eats 3 times a day. Cheryl Rose laments the lack of education available to parents about how to produce cannabis oil for their children. She is very grateful for the one-on-one help she received from dispensaries around British Columbia, some in Vancouver now carry Hayley’s Comet.

Cheryl would like to see Licensed Producers make oils and include the milligram dosage along with the Cannabinoid ratios on the labels of their product so that parents can know how to properly treat their children. The MMPR doesn’t permit Licensed Producers to make any form of cannabis extract although my recent court decision created a one year deadline for the government to amend the regulations.

To help fill the gap between their experiences and the desires of the medical establishment they have founded a Research Foundation to perform group studies of whole plant cannabis medicine. Advocates have launched a campaign aimed at “raising funds for a paediatric research study of the Hayley’s Comet strain on seizure disorders in children ages 10-18 years of age”.

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Hayley Rose watched Marc Emery smoke his Freedom Bong in Vancouver (Ben Nelms/The Canadian Press)

In the United States these kinds of efforts by parents are paying off as States are now passing laws to specifically allow CBD rich extracts where medical marijuana is still illegal for anyone else. Recently Alabama passed “Carly’s Law,” named for three-year-old Carly Chandler, and Georgia passed the “Haleigh’s Hope Act,” named for four-year-old Haleigh Cox. Each is intended to provide CBD-rich oil for children. This positive change in medical cannabis law continues to advance on the heels of tragedy. Utah governor Gary Herbert recently signed “Charlee’s Law,” giving people with intractable epilepsy access to CBD-rich cannabis oil, unfortunately only after its six-year-old namesake had passed.

For more information I highly suggest watching the two part series WEED by Dr. Sanjay Gupta.

Written for LiftMJ

by Owen Smith

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