Pubdate: Thu, 31 Dec 2015 Source: West Carleton Review (CN ON) Copyright: 2015 Metroland Contact: http://www.ottawacommunitynews.com/westcarleton-on Details: http://www.mapinc.org/media/4769 Author: Jessica Cunha MCKNIGHTS MAKING A DIFFERENCE Constance Bay Family Named West Carleton's Newsmaker of the Year The McKnight family is the West Carleton Review's Newsmaker of the Year for 2015. The Constance Bay family - which includes Mandy and her husband Dave, their son Liam and daughters Maya and Ava - scored a big win in July when Health Canada reversed its medical marijuana position, allowing users to ingest the drug in ways other than smoking. The overturned legislation launched the West Carleton family back into the spotlight as a face of the cause. Mandy fought for years for the right for her now seven-year-old son Liam, who has been diagnosed with a rare condition called Dravet syndrome, to have the legal right to take cannabis in oil form. "It was huge news for us only because now it means Liam can get a reliable, standardized product," she said. "That's what we always wanted." It's been a big year of firsts for Liam: a family vacation by plane without landing in hospital; the first time he attended the first day of school in September; participating in his school's Christmas concert; the first time he went 11 days straight without a seizure; and those are just highlights. In April, he earned the Celebrating Excellence Award of Merit for his outstanding contribution to his school community at St. Michael's in Fitzroy Harbour. "He's just doing so much better overall, health-wise, then what he's ever done. He's really doing amazing," said Mandy. "It really does change everything when he's able to get out and participate because it means us as a whole family can participate in life." Mandy and her family were at her parents' home in Newfoundland when they received the news of Health Canada's reversal. That trip was the first family outing by plane in more than three years. In the past when they would travel by plane Liam would end up in the hospital for "90 per cent of the trip," Mandy said, so they stopped visiting her family on the east coast. This time was different. "It was the best two-week family vacation we ever had. He did absolutely amazing. It's the first time we went home and he wasn't hospitalized at all." Other firsts for Liam this year included his first Reconciliation with the help of the staff from his school and Father Michael Ruddick, an Ottawa Senators NHL game, a family hike in the Gatineau hills and a visit to the Diefenbunker without having to use a stroller, a day at the Carp Fair, leisure time on the Constance Bay beach, and the ability to eat food as simple as a banana and cob of corn. All because his seizures are being better controlled. Before July, by-products of marijuana - such as oils - were prohibited. According to the law, Liam was expected to smoke or vaporize the drug, something Mandy said she never would have allowed. "I felt like what was being done to our family, to Liam in particular and to lots of other children, I felt it was a huge injustice. I felt like the government authorized him to use cannabis as a medicine, but then they put up so many roadblocks," she said. "It creates criminals out of law-abiding citizens." She began raising awareness about the benefits of cannabis oil through social media - Facebook, Twitter and Instagram; she petitioned federal MPs and created a letter campaign that saw people from across Canada write to their federal politicians about amending the medical marijuana law to allow for extracts; and the West Carleton family's struggle became news across the world. Liam had his first seizure at nine months old and in April 2010 was diagnosed with Dravet syndrome, a rare form of epilepsy that causes frequent and severe seizures. Liam would often have dozens of seizures in a 24-hour period, lasting as long as four minutes and with a recovery time of hours, said Mandy. After introducing him to cannabis oil, however, Liam's condition improved dramatically. He still has seizures, but nowhere near the frequency or intensity of before. "Now they last maybe 10 seconds and he can carry on doing whatever he was doing right away," she said. "The impact of the seizure is not anywhere near what the impact was before. He's doing so amazing that way." The McKnight family has helped dozens of other families from around the world - across Canada, the United States, Netherlands and the United Kingdom - consider the benefits of cannabis oil when other conventional medication efforts fail. "I get at least one email a day, some days multiple emails, from parents all over the world who really want to try cannabis for their children. They want to know the steps we took, how we arrived at a decision. We're always more than willing to share our experiences," said Mandy. "When we started cannabis, we saw incredible results immediately; we did not have these on traditional medications. I was very active in the Dravet community talking about cannabis, just everything and anything we could to try and get it out there that it's not this big bad drug it's made out to be. When I think of all the other (conventional) drugs Liam was on in his short little life, they were 10 times more detrimental." In February, Liam was weaned from the last of the pharmaceutical medications and now only uses cannabis to control his seizures. The McKnights have been instrumental in raising awareness about Dravet syndrome and epilepsy in the community and beyond. Mandy travelled to Toronto twice to talk about their journey with Liam, first as a keynote speaker at a women in the cannabis industry event and in second as a member of a women's panel on the impact of cannabis on their lives. She was awarded the Canadian Cannabis Crusader Award, handed out to an individual who has made significant contributions to the progression of cannabis knowledge, access, research or acceptance. It was awarded in recognition of the work she has done campaigning for greater access to cannabis oils and other derivatives for children suffering from seizures. The McKnights have hosted the annual Dravet Walk for the Kids for the past four summers, raising more than $180,000 for Dravet and epilepsy research. "I felt like I was compelled to do something and help in some way. People in this community feel the same way too because they're amazing and very supportive," said Mandy. The event has grown considerably; this year saw 18 affected families take part either in person or virtually, up from the original four the first year. The event was supplemented by a Dravet walk at Liam's school that raised over $1,100. Looking ahead to 2016, Mandy said she's waiting to hear that licensed producers can begin distributing cannabis oil. Tweed, a medical marijuana corporation based out of Smiths Falls, where Mandy plans to get Liam's oil, is just waiting on its Health Canada inspection, she said. Being able to purchase a standardized, licenced product will help cut down considerably on the number of steps - and hopefully the cost - of producing her own cannabis oil. Currently, Mandy purchases 150 grams of dry marijuana a month. She uses a recipe for the oil then ships a test sample to B.C. for every batch. The cost per month is more than $1,300 out of pocket, including tax on the cannabis. "It's crazy. Who can afford that? A lot of people using cannabis are on fixed income, or disability. I hope when legalization comes down all these things are taken into account," said Mandy. "Once the New Year rolls in and we start getting an idea too about what the plan is for legalization, I plan to definitely reach out to our MP, Karen (McCrimmon), and just highlight some concerns." Mandy said she would like to see insurance coverage for medical marijuana patients, as well as removal of the tax on a prescription. She said she also wants to ensure medical marijuana users aren't forgotten if and when the government legalizes pot. "When legalization occurs, I'm worried that there won't be that urgency anymore for research or insurance coverage for medical patients," she said. "For us, we really need insurance coverage. We're managing, barely, but it's only because of the amazing people especially in this community. If we didn't have that support I don't know what we would do." A number of fundraisers have been held for the family to help cover medical costs and all proceeds go to Liam's prescription - which the McKnights are very grateful for. "I'm shocked every time somebody does a fundraiser or calls me or would like to do something for Liam," said Mandy. "I just think this is such an amazing community. There's just something about him that makes us want to help; it makes us want to do something." Sammy's Bay Burgers, the Greystone Grill, the West Carleton Legion, BuzzOn Vapour Lounge are among the many hosting fundraisers for Liam. For continuing to raise awareness - locally and internationally - about Dravet syndrome, epilepsy, and the benefits of marijuana derivatives, the McKnights are our newsmaker of 2015. HONOURABLE MENTIONS Liberal MP Karen McCrimmon was elected in the new riding of Kanata-Carleton as the nation voted overwhelmingly red on Oct. 19. McCrimmon received 51 per cent of the vote in an area that has been a traditional Tory stronghold. The Constance Bay resident was recently appointed parliamentary secretary to the minister of Veterans Affairs and the associate minister of National Defence. We are expecting big things of our MP in the New Year, as she has consistently said her constituents are her top priority. Two years after the concept was created, many hundreds of thousands of dollars has been raised, allowing the Sandhills Project to be celebrated with an opening ribbon-cutting earlier this year. Traffic in the new addition to the Constance and Buckham's Bay Community Centre has been steadily increasing with the new fitness centre and classes, a larger library, and health care services. - --- MAP posted-by: Jay Bergstrom