An Idaho Native, Kannon just celebrated his 8th birthday — a birthday we were told 7 years ago, he would probably never have. Kannon was born a beautiful blue eyed happy baby June 19 2007. At 3.5 months life for him would change forever. Kannon started having seizures. Seizures lasting upwards of 3 hours. At 5 months old his first hospitalization occurred for a seizure lasting over an hour. We did not know at the time seizures would become our way life.
At 16 months after hundreds of seizures and many medication cocktails as well as many doctor visits, some as far away as Salt Lake Children’s hospital along with ambulance rides to the ER a genetic test was ordered. The diagnosis was Dravet Syndrome. Kannon had been born with an A and G deletion in his SNC1A chromosome. We finally had an answer. Dravet Syndrome. It however is not the answer as a parent you want to hear. Our boy was taking a cocktail of very abrasive medications Valproic acid twice a day Onfi twice a day (which has only been sold in the United States for a few years. Prior to that we ordered this medication from Canada. If you needed a refill and they were in short supply it got pretty scary, you couldn’t just run to the pharmacy to grab some more). When he went to the hospital you had to bring it with you. He has taken Risperidone since he was 17 months old. The average tv watcher knows how bad this medication is especially for little boys. Clonidine to help him fall asleep, and Carnitor because of the rest. We have Diastat as a rescue medication in the event he has a Tonic Clonic seizure that does not stop on its own and goes Status Epilepticus (this is a fancy term that means the seizure is not stopping and we are going to have to administer a large dose of an abrasive narcotic to a very tiny boy).
Now for the good stuff about Kannon. We were told our blue eyed freckled blonde with eye lashes that you can’t buy, would never walk, never talk and never develop ‘normally”, he would probably die before his third birthday. How would you like to hear that as a parent? Kannon’s parents sadly were not able to deal with his diagnosis or prognosis they both ran away screaming. I am his grandmother. My husband and I made the decision to adopt Kannon and his siblings one older one younger when Kannon was 4.The upside is Kannon beat every mile marker late but he beat them. He walked, he went to preschool at 3, he even had 150 words, he knew his colors and sang the ABC’s and Twinkle Twinkle little star. His favorite cartoons were Handy Many and the Mickey Mouse club. He even did his version of the “hot dog” dance.
On September 26, 2011 at 5:03 pm his life would change once again. Kannon was dealt a devastating blow, he had a Tonic Clonic seizure that lasted for 3 hours and 22 minutes. I won’t bore you with the laundry list of medication that he was given in that 3 hours. I will tell you though that 3 days later when he still had not awoken the PICU doctor explained that if he or I would have been given that many narcotics that fast we would have died. But give them to a 28 lb 4 year old was an only option. When Mr. woke up 4 days later all of his skill sets were gone. NO words, no smile, no walking no more “hot dog” dance. Kannon could not even swallow. He came home after 16 days in the hospital to a hospital bed with a feeding tube and an unknown but potentially bleak prognosis. We worked hard, he worked hard.
Today he walks, his gate is very unsteady, he smiles, he swallows, he has 5 words. He say’s eat, wa, dog, hug and hi. No more Hello, or Thank you. In an attempt to keep seizures at bay the medication he takes hinder speech, and development as a side affect. Yet we give them twice daily like clock work. An FYI some of the side affects of the the medication he has to take to not have seizures cause strokes. How would you like to give that to any already brain damaged child? We know however there is product out there on the market that could potentially help Kannon, help Kannon walk better, talk more, live longer, develop better, maybe read, maybe as an Idaho native Kannon could learn to fish and enjoy our great outdoors. He won’t get that chance however because he does live in the beautiful state of Idaho. The product out there that could potentially help Kannon grow learn and heal and be able to enjoy all the wonders Idaho has to offer is CBD, cannabidiol oil — the non psychoactive portion of Cannabis. I keep hearing parents say and I have said it myself , “I don’t want to get my child high”. Who are we kidding, as we give them their medications prescribed by doctors each and every day. Come to my house about 20 minutes after he takes clonidine, or hang out and watch what happens when I give him disastat to stop a seizure or his morning dose of risperidone, or what about that Onfi I told you about. All of these medications are scheduled narcotics and I am giving them to an 8 year old little boy. His very first medication at 5 months old was phenobarbital. I have to show ID to pick them up from the pharmacy.
I want him to have every medical advantage so he can have every advantage in life. It saddens me greatly being a Idaho native myself as cliche as it is, yes I am the granddaughter of a potato farmer. I love my home and everything it has to offer. I do not want to leave here. I shouldn’t have to. I want Kannon to fish and be out in nature, I want him to swim in Payette lake where I did as a child. I want him to camp and explore. He can do none of this today. We live in a State that screams morals and family values. Yet without the opportunity to try CBD without prosecution our family suffers. When Kannon can’t go, his siblings can’t go unless we divide our family. We often say I am sorry we can’t go camping, we can’t go fishing it is to hot for Kannon. It is to far from medical support if he has a seizure we can’t stop. We are divided and disjointed, and when that happens family breaks down.
We need to have the option to at least try CBD for Kannon. He deserves the same lifestyle and the amazing perks every other Idaho child gets. Without a yes to a simple herbal supplement Kannon will never have the opportunity to live as every Idaho child should have the joy of living.
Thank you for letting me share Kannon OH Kannon with you. Let our Idaho Faces touch your souls. Let our elected officials know that Kannon and his friends need their help. Without it Kannon may not see another birthday. Each one he has had has been bought with borrowed time. I was asked also to tell you one thing I want the world to know about Kannon. In spite of everything he has gone through Kannon is one of the sweetest happiest children you will every meet.