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Owen's Story

Posted on July 16 2015

Owen's Story
Owen is spectacular. He is 19 months old, strawberry blonde with sparkling blue eyes, has a very tenacious spirit, knows no stranger, gives raspberries for kisses, smiles, laughs, loves his doggie, and he has Dravet syndrome.

His first seizure, at three months old, was at least eight minutes. The doctors said “it couldn’t have been that long; seizures don’t last that long.” Still, doctors weren’t concerned. He didn’t have a fever, he wasn’t ill, and “he looks so good!” Because of that, we shouldn’t worry. But then Owen had another seizure, then another, and another. We stared pharmaceuticals. He was meeting all his milestones, the EEGs were normal. We were told “it is a very real possibility” he could grow out of the seizures.

And yet, the seizures continued. Medicine changes, dose increases; still seizing. Suddenly NINE weeks seizure free; we got it, we are done with seizures. Then, just before his first birthday, I thought he was having mini break through seizures. This was when our neurologist got worried. An EEG now showed abnormal activity, milestones now missed, and a genetic test showed a random mutation. At Christmas we got the diagnosis; Owen has Dravet.

We started reading the research papers. Each paper gave a dire prognosis. One said he wouldn’t have the mental capacity past that of a four year old. More said he would be lucky to see the age of six, confined to a wheel chair, rely on a feeding tube. Each word condemning our child to a life devoid of normalcy, a life without quality, or quantity. Oh and, by the way, it’s only going to get worse. All the dreams we had as first time parents? Shattered. All the hopes we had for this precious boy? Vapor.

So, what next? We heard of the miracles of CBD oil; and found hope. We fought in our state (Idaho) to have access to CBD. A bill that would provide an “affirmative defense” was voted on and passed in the house and the senate. The bill didn’t “legalize” anything but, we could have access to and talk to our doctors about CBD. Unfortunately, the governor of our state vetoed the bill. Now what?

What it comes down to is hope; hope of what could be. Hope of federal laws changing. Hope for the next legislative session. Hope that the oil will help Owen. What if we
could completely change the trajectory of this disease with a plant? A natural, non-psychoactive, minimal side effect, plant derived oil? What if CBD could do that for Owen? It may do nothing, but it might do everything.

It bothers me when people say “my Dravet son” or “my special needs daughter.” These are labels. These are not who the children are. My son HAS Dravet, but that is NOT who he is. Who is Owen? Owen is my son and he is spectacular.

Please help spread awareness about Dravet as well as the 'Face of Cannabis' project which aims to raise awareness and facilitate change amid use of medical marijuana oil. For more information, please check out their website: https://faceofcannabis.wordpress.com/

~Excerpt beautifully written by Owen's dedicated, amazing and wonderful mother, Austin.

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