Friday, July 18, 2014

Liam McKnight Breaking Good with Health Canada

For those of you who don't know my sister Mandy's son Liam McKnight has been afflicted with a terrible disease called Dravet Syndrome. Dravet is a rare and very debilitating form of epilepsy that has changed Liam's life and all of those around him. My heart breaks every time I see my sister posts another story on his Facebook page Liam's Journey - Epilepsy chronicling his life as he battles this terrible affliction.

Liam is 6 years old and has been having seizures since he was 9 1/2 month old and each and every one he has takes a toll on his little body. Over the past 5 years Liam has undergone countless tests, scans, diets, drugs and nothing has seemed to make his life or the life of his family any better. The doctors kept changing his medications and changing doses to try and find some balance to help him but aside from some small victories along the way the treatment process has done nothing to make his life better in my opinion. In fact the combination of the medications and the constant seizing has made matters worse for him because he has suffered setbacks in his development and even some brain damage. When my sister approached Liam's doctor in Ottawa to ask them to give Liam a prescription for medicinal marijuana they said no. Even after they had told Mandy that there was nothing else they could do for him in regards to treatment with prescription drugs. At that point Mandy scoured the country trying to find a doctor that would give him the prescription. She found one in Edmonton but that meant she had to fly Liam out there to see the doctor, which she did and things have started looking up from there.

Most recently stories published in the Telegram, Ottawa Citizen, Huffington Post, National Post, The Star Phoenix among others have told the story of how for the first time Liam has a viable medicine that saw him recently go ten days without a seizure. The problem is that in order to get this medicine in the form that is really the only option for him is against Health Canada rules for medicinal marijuana. You see Liam needs to have a very specific mixture of his medicine and it is largely dependent on the percentage of CBD in it. That is the compound found in the cannabis plant that helps him, not the THC part that makes you high.

So in order for Liam to get his medicine, the only thing that has worked in the past 6 years that doesn't contribute to giving him brain damage or developmental problems my sister has to break the law. She needs to take the dried cannabis buds, send them to Montreal to have them made into the proper oil than send a sample of that oil to British Columbia for analysis to know what dosage to give Liam. All this because Health Canada says that the only way Liam is allowed to take his medicine is by either smoking it, or through a vaporizer. Mandy states very clearly in multiple interviews why this is not an option for a child like Liam suffering from Dravet Syndrome.

I am not going to get into all the specifics but I would like my sister and her family and especially my nephew Liam that I and my family are behind them 100%. Living so far away from them and not being able to offer help with every day things we have tried and continue to support them in other ways. We have done multiple fundraisers and try to spread the word about their struggle but it always feels like it is hardly enough.

I guess the most important thing I can do for Liam is to let him know I love him and am always rooting for him to have a good day. I know that may sound strange to hope that he has a good day but that is the reality of the situation. Every day that Liam can go without having a seizure is a good day and if he can go two that is a great day for him and those who love him.

Here are some links to recent stories about Liam and his "breaking good" with Health Canada

Telegram Story - Marijuana has set him free

Ottawa Citizen - Six-year-old medical marijuana user runs afoul of Health Canada rules

National Post - 'Health Canada says he has to smoke it’: Six-year-old medical marijuana patient not allowed to use cannabis oil

Huffington Post - Health Canada Rules Require Liam McKnight, Child With Epilepsy, To Smoke Marijuana

The StarPhoenix - Six-year-old user runs afoul of Health Canada's rules

I have compiled a small video with some photos as Liam's life has progressed and want to share it. I can tell you right now that just putting this together was a very emotional experience for me and I hope that you enjoy it and understand just how special Liam is and show your support any way you can.

Thursday, July 17, 2014

Town of Torbay - Great events so far this summer and more to come

Well I have to say the weather lately is certainly something to talk about but so are the events that the Town of Torbay has had so far this summer. The month of July has been a very busy time for staff and council alike and we are not finished yet.

Starting on July 1st I had the privilege of assisting to lay the Town's wreath at the Memorial Day Ceremony. The event was very well attended and former Mayor Bob Codner did a great job organizing and as MC. As always in NL July 1st has a much deeper meaning to us than just Canada Day, it is the day when we reflect on the sacrifice that so many Newfoundlanders have made especially on that dreaded day in Beaumont-Hamel in 1916.

Once that ceremony was over I went to the Fire Department for a small reception and a cool drink before heading out to Jeck Byrne Arena to kick off our Canada Day celebrations. Mayor Tapper and I were on hand for the cake cutting and the official start to our events. The weather was beautiful and despite being inside the festivities at the arena were very well attended and seemed to be popular, especially with the younger children. The bouncy castles and the juggler were certainly well received.

As the day progressed I dropped over to the Gig on the Green that was held at Pine Ridge Park and again that event was very well attended. There were great acts lined up to perform and several vendors set up selling their merchandise. Entertainment included Acrobat Danielle Aubut and musical acts, Danika Drover, Lew Skinner and Justin Martin and closing out the evening The Rolling Kings. This is the second year for this event and seemed to be even better attended than last year.

Finally to round out the evening and close out our Canada Day celebrations the Town of Torbay put off a fabulous fire works display at Torbay Beach. The fireworks lasted for a little over 16 minutes according to my watch and the reviews I received afterwards were very positive.

Overall I think that our Canada Day celebrations were very well planned and also well attended and the comments I received were positive. I would like to pass on my compliments to town staff and residents for making all the events a pleasure to attend and a great success.

Last week the town had a concert at historic Tapper Cove, Tunes at Tappers, and again this was a very well planned and attended event. The town had 200 tickets printed and they were all sold which in itself was very promising. Mayor Tapper and I attended that event as well and he gave a very warm welcome to all who were in attendance and the performers did a great job entertaining the crowd. Event goers were also treated to a bowl of fish stew in exchange for their ticket stub. One interesting point to make about this event is that there was no parking allowed at the site and all concert goers were transported to the cove by Prestige East Taxi who were contracted to provide shuttle service. Due to the nature of the access to Tappers Cove which is basically a very narrow and steep road I think this was a very good decision and the shuttle service seemed to run very good. I was speaking to a lot of people throughout the evening and every person I spoke to was thrilled with the entire event. Hopefully this is something that we can do again in the future.

This evening July 17th the Town is hosting a BBQ in Western Island Pond Park from 5:30 to 7:30. This is another great initiative that I see as neighbourhood building and an opportunity for residents to get out and meet their neighbours and also members of council and staff who may be in attendance. I look forward to it and will be on hand to help distribute burgers and hot dogs to what I am hoping will be a large turnout of residents.

We will also be hosting another of these neighbourhood BBQ's on August 12 at the Motion Drive playground, spread the word if you live in that area.

July has been a very busy month and it doesn't seem to be letting up, we also have our deadline for 2014 Silver Spades Property Beautification Awards on July 24. If you would like to nominate someone of get more information please send an email to today.

Last but not least the Killick Coast Regional Games will be hosted in Torbay this year and the opening ceremonies will take place on Monday, July 28, 6:30 at the Kinsmen Centre. Be sure to come out and show your support for our local athletes.

Here are some pictures from various events during the month of July.

Acrobat Danielle Aubut - Gig on the Green

Making balloon animals - Gig on the Green

Vendors set up at Gig on the Green

Mayor Tapper greeting crowd at Tunes at Tappers

Nick Wells and Chelsea Parsons - Tunes at Tappers

Crowd enjoying John Curran and Greg Walsh - Tunes at Tappers

John Curran and Greg Walsh - Tunes at Tappers