AUSTIN, Texas — Between three boys, two dogs and their farm animals, parents CJ and Chad Jakel of Lockhart, have their hands full.
"There's lots of dirt and trucks and mud. When they're sweet it's very sweet. when they're rough, it's a little bit rougher than your typical three boys," said CJ, Callen's mother.
Callen is the middle child. He loves to play air hockey, climb, throw the football and play with his little brothers.
"He's just a joy to be around," said Chad, Callen's father. "He's just really happy all the time. He's my little buddy."
Things for Callen, the smiling, energetic eight-year-old, weren't always like this though.
"He started having seizures when he was about 17 months old, and at that point, he was having about 70 to 100 seizures per day," said CJ. "So, he would pretty much, that's pretty much all he was doing all day. They sort of morphed as he got older, to become a longer, harder more intense seizure less often. Callen has a rare genetic condition called 'KCNB1.' He's about one of 65 kids in the world diagnosed with this. It is a potassium channelopothy, they don't fully understand the ramifications, but it is - epilepsy is a huge component of the disorder."
One of the other conditions of the disorder is also intellectual development disability, or IDB, causing him also to mostly be non-verbal.
"Callen operates on the level of about a two-year-old, and when you have an 8 year-old body with a two-year-old mentality, he can reach a lot of things that a two-year-old can't," said CJ. "He can get into a lot of things."
This means sometimes Callen can get a little rough and may not realize it. After a closer look around the Jakel's home, you might notice some things seem out of place, but all serving an important purpose.
"Most of our stuff is screwed into the walls, or screwed into the floors," said CJ. "We're through like TV number three now because of a thrown milk cup."
Things began to change for the family last summer.
"In June we were finally able to get our first dose of medicine and Callen has been seizure-free ever since starting that medication," said CJ, referring to the doses of CBD (Cannabidiol) oil prescribed to Callen.
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She said Callen is given the oil twice a day: one dose at home, one dose at school.
In addition to being seizure-free, another dramatic change the parents have seen in Callen is babbling more and wanting to talk.
"I now have heard my child say I love you, it was only one time, but I heard it," said CJ. "He said it! And that as a mother was something I thought I was never going to get from him! Not that I don't know that he loves me, but I never thought I was going to hear him say it and because of this medicine I've heard it."
Families like the Jakels receive their CBD oil doses from Compassionate Cultivation, who are based out of Manchaca and distribute the medicine across the entire state. Their dispensary has now been open for one year.
Compassionate Cultivation, as one of three medical cannabis licensees in Texas, is authorized to grow and process marijuana. or cannabis, because the law allows them to cultivate the product up to 0.5% THC by weight.
"2018 was a transformational year for us, for our business and frankly for the cannabis industry in Texas," said Morris Denton, Chief Executive Officer of Compassionate Cultivation. "It's the year that will go down as being the watershed year when a legal cannabis industry took hold. What I think we're most proud of at Compassionate Cultivation is the lives that we're changing with our patients and families. I really didn't have any true understanding of how powerful this medicine was going to be until we started hearing the success stories from our patients."
Denton said while the majority of their patients are pediatric, patients six months to 75-years-old have been taking their CBD oil to treat their epilepsy.
How it works:
"In this one facility we do everything from growing the plant, cultivating the plant, harvesting the plant, taking it through the extraction process, then refining the crude oil that comes out of that extraction process, we take it through multiple refining stages and purification stages, then we go through a flash chromatography process that enables us to hit extraordinarily stringent levels of variability in order to have very consistent medicine," explained Denton. "We test the product at every step function through the way, then we manufacture, package and distribute out of this location. We also have patients that come here that pick up their medicine, but otherwise, about 95% of our patients are spread throughout Texas."
With about a dozen marijuana-related bills filed this session, there are many people who want to see changes to how marijuana is used in Texas, when it comes to decriminalizing and access to its medicinal benefits.
With the passing of the recent federal Farm Bill, industrial hemp production will be made not only legal, but cheaper. It will also be managed by the department of agriculture as a crop, instead of an illegal substance by the justice department.
"Part of the regulations that will come down, very likely, will come to the -- Department of Agriculture to implement the new laws and we’ll make the regulations," said Texas Ag Commissioner Sid Miller, who had been very outspoken about the farm bill's passing, but solely for the benefit of Texas farmers and families with a loved one suffering from seizures. "So we'll have to inspect, test, make sure it's not contaminated with too much THC."
"This is not a backdoor to growing weed or marijuana, that's not what this is, this is about producing a lot of products, of 2500 products made from hemp," said Miller. "One that's the hottest right now that people are most interested in, is medicinal uses like CBD oil, which is used to treat seizures, chronic pain, a lot of things."
While the Jakels have been met with challenges that perhaps most families have not had to face, Chad and CJ said they're proud of everything they've built together.
"When did I ever think that I would be calling myself lucky because my child has intractable epilepsy?" said CJ. "I hope that people, what they can take from Callen's story, is that epilepsy can shatter a family, it can be intense, it can be hard, but there is help."