Marijuana has set him free

Steve
Steve Bartlett
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But federal law hinders boy’s access to the extract he needs to control seizures

Mandy McKnight secretly cries, often while driving alone.

Liam McKnight takes his first boat ride recently. The Ottawa boy, whose mother is from Torbay, has Dravet syndrome, a severe form of epilepsy that can cause him to have as many as 70 seizures a day. Medicinal marijuana is enabling him to enjoy things like boat rides. — Photo by Tracey Haycox/Special to The Telegram

The car, she suggests, gives her an opportunity to reflect, to imagine a life where her six-year-old boy didn’t have prolonged seizures, to wonder what the future will bring for a child at constant risk of injury, to wonder if this continuing state of emergency will last forever.

“You’re always anxious. You’re always waiting, You never relax,” says Mandy, who is from Torbay, but lives in Ottawa. “You’re always anticipating a seizure, no matter what. ... You’re constantly on edge.”

Liam’s seizures are caused by Dravet syndrome, a severe form of epilepsy. They are severe and plentiful — he has had 70 in one day. He wears a helmet in case he falls and bangs his head.

He forgets and often has to relearn skills like walking and holding a fork.

And the years of constant seizures are taking a physical toll on the boy, who weighs about 45 pounds.

“He’s aways at risk of permanent damage or death from seizures,” Mandy says.

But there is hope — medicinal marijuana.

Liam is one of the youngest licensed users in Canada.

Mandy and her husband, Dave McKnight, got the idea to try Liam on cannabis after meeting a father who was treating his son that way during a Dravet syndrome conference in Minnesota in 2012.

Knowing something had to be done to make Liam’s life better, there was zero hesitation. To people who might question their decision, or suggest the McKnights wanted to get their son high, Mandy is quick to shoot back, saying Liam has been on a cocktail of drugs that affects his behaviour since the age of nine months.

“If people think these kids aren’t high already, they are delusional,” she says. “If the cannabis — it’s non- pyschoactive — is going to give him an opportunity to be a normal kid, to not be drugged up on all these other medications, (we’re going to try it).”

Liam’s neurologist wouldn’t write the prescription so they searched from St. John’s to Vancouver to find a physician who would.

With the help of another Dravnet family, they finally found one in Edmonton. Liam received his licence to use marijuana last July at age five.

He began with a small amount of extract at bedtime. The results were immediate, with the duration of his seizures dropping from three or four minutes to 20 seconds or so.

Recently, things have gotten even better.

In April, after federal guidelines changed, the McKnights registered their son with Bedrocan, a licensed supplier of medicinal marijuana.

Liam started taking a new extract in June and went 10 full days without a seizure.

And so a kid who missed most of kindergarten this year was able to make his graduation, and the McKnight family — which includes Liam’s two older sisters — did things many people take for granted.

There were trips to the beach and park, and Liam even tried tubing.

“Tubing!” Mandy says. “I couldn’t believe it.”

The seizure-free period didn’t take away the worries, but it did ease the pressure on everyone, especially Liam.

He was different kid.

The positive experiences have continued. Liam’s seizures have lessened in both duration and frequency, and he was able to go horseback riding last weekend.

“It’s just giving him an opportunity to live, to not just be home seizing,” Mandy says of the marijuana extract, which is administered in a coconut oil base.

But as much of a godsend as it is, the extract has become a frustration for the McKnights.

Federal law permits suppliers to sell medicinal marijuana in its pure form, meaning it expects Liam — and even younger users — to inhale it through a vaporizer, or to smoke it.

Licenced providers can’t sell an extract, so Mandy has to go through a lengthy and illegal process to get Liam’s medicine made.

A package of marijuana arrives at her door and she sends it to a guy with the Medical Cannabis Access Society in Montreal.

He creates the extract and then Mandy has to send samples to a lab in British Columbia for testing to see if it’s good to use.

“Liam could be getting too little or too much,” she said.

The predicament puts Liam’s access to quality medicine at risk and Mandy fears it could result in a return to more and longer seizures.

“Life would be great if we could get it in the oil form from a licenced producer,” she says.

She’s unsuccessfully lobbied provincial and federal politicians in Ontario to make that possible. She says marijuana producers have pushed for the same thing.

“It’s just frustrating,” Mandy says. “I just wish people would use their common sense, get past the issue and just think about it. You’re asking kids — it doesn’t even make sense — to smoke or to vaporize. If you just saw what we did — all we do is put oil on a spoon when he takes it. … It’s like sending someone who has a heart condition a bunch of powder and telling them to go figure it out.”

It’s time for decision-makers to find a better way for kids like Liam and others whose health might benefit from a cannabis extract. It would help prevent so much suffering for the children and their families, and perhaps parents like Mandy wouldn’t find themselves crying in their car when they get a rare moment alone.

As she rightly points out, it’s an issue of compassion and not drugs,

The McKnights — who have gotten a lot of support from family and friends in Torbay — don’t know how long Liam will be with them. They live in the moment and promise to surround their son with love and — in Mandy’s words — “keep him happy beyond measure.”

“The key to his happiness is having control of his illness,” she says. “The longer he goes without seizures the more he can learn, the safer he is, the more he can do. If he’s just home seizing all of the time, what’s the quality of life there? There is none.”

Liam's Journey

Organizations: Medical Cannabis Access Society

Geographic location: Torbay, Ottawa, Minnesota Vancouver Edmonton British Columbia Ontario

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Recent comments

  • Patricia
    July 18, 2014 - 07:13

    My daughter has epilepsy also and when she was younger was having up to 60 seizures a day according to her neurologist, although they were smaller seizures. The smaller seizures are harder to treat ,and they take a toll on your body .She would always be tired and needed naps.Let's hope the powers that be will see fit to sanction this marijuana treatment ,if it helps this little boy lead a normal life.I have added Liam to my growing prayer list

  • Marilyn White
    July 16, 2014 - 23:17

    It is difficult to comprehend why this little guy and his loving family have to fight so hard to get a life-saving treatment for their son. They should not have to get it from Vancouver or Montreal or wherever. They live in Ottawa and it should readily available in the proper formula and dosage for him. It is medical marijuana which has the potential of dramatically improving the quality of life and should be available as such in every Province of Canada through the pharmacist like any other drug. It's time for the rules to change in this situation. I am joining the fight for Liam!

  • ChristyZavitske
    July 16, 2014 - 16:36

    Amazing! Amazing boy and amazing family! XOXOX So what can we do? Who can we tweet, e-mail, call, etc. One of our fellow oncology friends was denied treatment by OHIP - treatment that she could get in the U.S. but not here. The amount of support she received in a short amount of time got politicians listening. She is now in Denver receiving the treatment and it is being paid for by OHIP. So lets rally the troops and do what we have to do - lets get this sorted out for Liam. Just let me know what I can do.

  • Shane
    July 16, 2014 - 14:19

    Very brave mrs McKnight. Sharing this story is what is needed. The public will have you back if anyone tries to make something of this @steve that's not the reason why it is illegal. It may be a part but you can not attribute it as the sole reason. I think you should look south of the border for the reason it is illegal today.

    • Janet
      July 17, 2014 - 10:46

      Actually, if you look with the intent of learning instead of through the eyes of ignorant prejudice, you will find that Colorado, the first state to legalize, is doing very well. Crime is down, the State's deficit is being taken care of and a whole lot of people are very happy indeed. Nice attempt to deflect from the issue, but the proof that you are wrong is already in.

  • julie
    July 16, 2014 - 12:51

    This is not the first case that I have heard about. Give Harper the boot is right & let this little boy have a normal child hood..... No child should have to go without any type of medication , no matter what it is, because of one idiot (harper) who thinks is wrong. Get your heads out of your arse.... If it was someone related to him who needed this medication his opinion would change. GO LIAM !!!!!

  • Angela
    July 16, 2014 - 11:33

    Thanks for sharing this story. So happy to see that the quality of this boy's life has improved. Hopefully your story will help others be more open minded so that others may benefit from that natural substance.

  • Ross Clark
    July 16, 2014 - 10:10

    Yet another reason to send Harper packing, and elect Trudeau, imho

  • Vanessa
    July 16, 2014 - 09:17

    I can totally sympathize with this family. You want to do whatever you can to make your child happy and as healthy as possible. He has already taken every different kind of drug, this is a medical form of another, and it seems to help! So why not?

  • Mandy McKnight
    July 16, 2014 - 08:27

    Thank you Steve for allowing us the opportunity to tell Liam's story. It's about getting medication in a form of delivery that is suitable for Liam and many sick Canadian's who can't smoke or use a vapourize. Health Canada give your head a shake! Cheers! Liam's ARMY

  • Steve
    July 16, 2014 - 07:56

    The one thing they don’t talk about anywhere (at least in government circles) is why pot is illegal in the first place. The main reason it is illegal is because back in the 30′s William Randolph Hearst owned a lot of newspapers and owned the paper mills that printed the paper. Hemp (which of course is not exactly the same thing as marijuana but is commonly associated and lumped together with it) was competing with his paper production so he rallied his friends in power (government) and finally made it illegal in 1937. I don’t think a lot of people know this.