The fact that this horrible, mostly unheard of disease was able to catapult the legalization of medical marijuana forward in Georgia (and many other states that have been resistant to the notion of legal pot) in such a short amount of time is something of a surprise in and of itself. After all, serious activists have been fighting for cannabis reform in Georgia for decades and have been all but ignored. But now our lawmakers are beginning to listen to the marijuana-is-medicine message, and I think it’s important that we understand why that is.
What is Dravet Syndrome?
Dravet Syndrome is a rare form of intractable (difficult to control) epilepsy that begins in infancy and lasts throughout the life of the patient. According to the Dravet Syndrome Foundation, Dravet is an insidious, debilitating disease that afflicts approximately 1 in every 40,000 births. Dravet Syndrome is a disease that affects every aspect of the patient’s life and imposes a burden on parents that is impossible to imagine. In other words, Dravet Syndrome sucks, and it sucks for everyone involved.
Like many other diseases that have no known cure, Dravet Syndrome patients are usually given very strong medications that cause horrible side effects and frequently have little preventative or curative value. Children may have dozens or hundreds of seizures per day while their parents are often left to watch helplessly as they wonder, deep down in the part of their psyche that they try not to access too often, whether or not this will be their baby’s last moments on earth. Parents of children with intractable epilepsy face this same “Groundhog Day” type nightmare every day for the entire life of their child. They learn the names of all the doctors and nurses in the ER because they spend so much time there. They have favorite firefighters and paramedics because they ride on the ambulance so often. They keep food and clothes and toothpaste handy that they can take with them to the hospital. It sucks really, really bad.
Medical marijuana provides hope
In 2011 a determined California father that few people have ever heard of did something so extraordinary that it literally changed the conversation, nationwide, about the usefulness of cannabis as medicine.
Jason David, whose son Jayden suffers from Dravet Syndrome, began treating his son with a cannabis-based tincture that was high in CBD and low in THC. Jason worked with Oakland-based mega dispensary Harborside Health Center to develop the tincture, and gave Jayden his first dose on the nationally televised show Weed Wars. After taking his first dose Jayden went four days without a seizure. Then, in 2013, Dr. Sanjay Gupta released the first of a three-part documentary series on CNN titled ‘Weed’, which showcased the Stanley brothers in Colorado and introduced Charlotte’s Web to the world.
From that moment until now the voice of parents demanding safe access to cannabis medicine for their children has risen sharply, and lawmakers around the country no longer have the option of tuning them out. The excruciatingly painful message of these very sick children forces lawmakers to seriously consider marijuana as medicine, which has allowed us to change the conversation about many different diseases by showing how cannabis can be used to treat them as well.
Let’s make a Deal
In April 2015 Governor Deal signed into law an act authorizing the possession of what the state calls “Low THC Oil” by patients with certain qualifying conditions. At the time this decriminalization law, the Haleigh’s Hope Act, was signed Governor Deal expressed his opposition to in-state marijuana cultivation and essentially said that we would “talk about it another day”. Well, “another day” arrived this year with the filing of House Bill 722 (as promised, shoulda seen that one coming), which would create a robust, regulated medical marijuana system in Georgia. And rather than evolving on the issue, like most of the members of the Georgia General Assembly have over the last eight months, Governor Deal continues to oppose the in-state cultivation and production of cannabis medicine.
Not only does the governor strongly oppose providing safe in-state access to the very substance he legalized, he recently went so far as to criticize (some may even say threaten) the state representative that created the law by calling him on the carpet for publicly admitting to obtaining and distributing cannabis oil to certain qualified patients. Governor Deal doesn’t want us to grow it, extract it, bottle it, sell it or import it, but he’s got no problem letting a ginormous pharmaceutical company
peddle test their product here. $trange, right?
What should we tell Cooper?
About a week ago we received an email from Ryan King, a south Georgia father and highly-engaged Dravet activist, looking for help obtaining low THC oil for his very sick 4 year-old son Cooper, which we gladly provided to him. “He is currently on a cocktail of medications in which eventually his body builds immunity to and his seizure activity spikes , thus bringing his quality of life down” Ryan told us. “I called the Department of Public Health and they couldn’t recommend where to get it. Nobody knows where to get it.”
Cooper’s seizures are hard to control and normal, every day things we don’t think twice about using on ourselves can make them even worse. “He has been on a numerous amount of different medicines. Right now he has switched back to Depekote and his constant medication he has received has been Klonopin. He has been through a torturous 2 year ketogenic diet which somewhat lessened the seizures but leaves him hungry all the time. His allergies are controlled by numerous amounts of creams oils and lotions. Benadryll is a relief but will almost guarantee 2-3 seizures in the night or early morning. EEG’s and labwork has taken up a huge chunck of his life so far.”
The stresses of raising a special needs child on the family
The damage of Dravet Syndrome can reach far beyond the physical body, and it can have profound effects on the entire family. Ryan told me that many marriages subjected to similar circumstances frequently fail, and his own marriage, unfortunately, fared no better.
“I have seen the worst of the worst. Hospitals not listening and giving him too much medication which resulted in my child going into respiratory arrest. Major cuts and bruises due to balance issues. The relationship between his brother has had some strain due to his inability to speak clear words or know what he needs or wants. I have pulled him out from under water in the bath and pools due to seizures. 3-4 sets of different stitches throughout his body due to poor balance or seizure related accidents. 90% of marriages wind up in divorce which has come to show true in mine as well. The frustration of driving 5 hours for a doctor who actually knows what Dravet is for a simple check up. The frustration of having to drive 5 hours back in the same day. Not finding a normal baby sitter. The worry while we are actually away from Cooper and having to check on him regularly while trying to enjoy one night of normal adult fun.”
“The fact that SUDEP (sudden unexplained death) is always a possibility and most kids with dravet gain their angel wings by the age of 5. Spending Christmas mornings fighting cluster seizures. Getting support from complete strangers because that is the only support you can trust because doctors don’t know and the parents with kids like ours are the only people who understand. It’s a constant fear of letting your child try to live a normal life. It’s crawling to the top of a playground to retrieve your seizing child. Its having to get your child sedated and put 6 silver caps on his teeth due to rotting from medicine and diet. Through all of this COOPER is HAPPY! So it makes it possible when we see him smile in the end. He is definitely the strongest human I know.”
A message to Governor Deal
While discussing this story with Ryan I asked if he had anything to say to Governor Deal, given the fact that he is threatening to completely derail in-state cultivation of Cooper’s medicine. He had more than a few words.
He should be ashamed of himself. He is in a position to give kids as well as others a chance at normal lives. I don’t wish this upon him because I honestly do not think he could handle a child or close relative with Dravet. I would say walk a mile in my shoes, however I would not even let him clean the dirt off. The dirt stays as a reminder of how hard we work daily to help Cooper and all kids to get the proper medicine they need. Legal or illegal it doesnt matter. If it helps someone to live, you do it. State Representative Allen Peake is my Hero. Even when his mother was in poor health and her final times, his fight continued for us! I don’t see how Gov. Deal can look in the mirror and live with the fact of not approving what he knows will eventually be done with medical marijuana. However, If he came to my house today, I could open the door and Cooper would run out and hug that man! Because he is full of love for ALL people. A strong lesson Mr. Deal could take out of Cooper King’s book of life.
In learning about Cooper I found out that Ryan and his wife have sponsored several fundraisers for the Dravet Syndrome Foundation, including Drinks for Dravet, various races and restaurant donations, raising thousands of dollars for much-needed research. Through their Team Cooper Facebook page Cooper’s parents keeps everyone updated on his progress and advocates for other patients. Please stop by and show your support!
Celebrating another milestone….
Posted by Team Cooper on Tuesday, April 21, 2015