Mother says misconceptions cloud legal marijuana
Odin couple sees cannabis as last hope for their son
BY DALE HOGG
ODIN – Owen Klug was born healthy baby boy, but that lasted only about six months. That’s when the seizures started.
Now, Owen’s mother and father Kiley and Gavin Klug of Odin know their son suffers from a severe form of epilepsy. And they firmly believe there is only one option left to help their son lead a normal life – the use of medicinal marijuana, more specifically, the cannabis oil extracted from it.
“We know this medicine has worked for other children just like Owen,” Kiley said. “Owen deserves this same chance to thrive.”
The Klugs were in Topeka Wednesday to testify before the Senate Committee on Public Health and Welfare on the benefits of medical cannabis.
Kiley gets frustrated with people who blur the lines between what she is seeking for her son, medicinal cannabis, the legalized pot. All she and Gavin want access to is the cannabis oil.
“There’s a big difference between smoking marijuana and the using the oils,” she said. “We are not getting our son high. We want people around here to understand that.”
How did it get to this point?
Kiley said the seizures came and went until he turned two. Then “he started having them multiple times a day.”
What followed was a grueling and heart-wrenching year of testing, and visits to neurologists and other doctors. One exam showed the boy endured more than 200 seizures in an 18-hour period, yet no definitive cause could be found.
That’s when little Owen was diagnosed with Dravat syndrome, a severe form of epilepsy. Since there was no direct evidence, the diagnosis was based on “signs and signals,” Kiley said.
The National Institutes of Health labels Dravat as a rare disorder. The NIH notes there is no cure and the illness may stunt a child’s development, leading to a life dependent on caregivers.
It’s not fully known how many people are affected. Reports suggest that 1 in 20 to 1 in 40,000 people have Dravet syndrome.
Now, Owen has between 10 and 40 attacks daily. But, “these are the ones we see. We’re sure he has more than that.”
Most of Owen’s seizures are quick incidents involving drooping arms and some flailing. He has had a few longer, grand mal-type seizures as well.
Kiley and Gavin have two other children, Dexter, age 4, and Blake, age 1. Blake was diagnosed with type 1 diabetes just before his first birthday.
Kiley had taught at Great Bend Middle School, but left five years ago so she could be at home for Owen. She was getting ready to go back into teaching when she got the news about Blake, so she will be at home for a while longer.
Gavin works at Superior-Essex in Hoisington and is a mason.
TOPEKA – Seven-year-old Owen Klug suffers from a severe form of epilepsy and endures dozens of seizures every day.
“It’s been pretty devastating,” said Owen’s mother Kiley Klug. With each attack, Owen loses ground.
For now, he remains a full-time first grader at Eisenhower Elementary School in Great Bend. But, “his development really involves seizure control,” Kiley said.
Kiley and her husband Gavin Klug believe this control can come from medicinal marijuana, more specifically, the cannabis oil extracted from it. “With this, he can thrive and progress,” Kiley said.
The Odin couple was at the Statehouse in Topeka Wednesday to testify before the Senate Committee on Public Health and Welfare on the benefits of medical cannabis. There are twin bills in the Senate and House of Representatives that would legalize such marijuana use, but both bills face an uncertain future.
The trip to Topeka has thrust Owen and his family into the media spotlight
“It’s been crazy,” Kiley said. “But, if all this attention gets Owen what he needs, I’ll do what it takes.”
Her son, she said, is out of other legal options to control his disease. She sees this as a last chance to help him.
“I’m just happy this is getting this publicity,” said Kiley. “I just hope the people who matter with the Legislature get the education and do what is right.”
She said her son couldn’t await government-sanctioned research or speeches about the potential side effects of medical cannabis.
Opponents to the idea testified Thursday. Now, the matter is in the hands of lawmakers.
Meanwhile, in Topeka
The 22-page Senate bill, the Cannabis Compassion and Care Act, is sponsored by Sen. David Haley (D-Kansas City). “Their story is compelling,” Haley said of the Klugs and other families who testified Wednesday supporting medical marijuana.
“We shouldn’t demonize and criminalize people like the Klugs who just want an effective method to treat their children,” Haley said. His wife is a pediatrician who practices in Missouri and has said she’s seen the benefits of medical cannabis.
Senate Bill 9 was introduced on Jan. 12 and referred to the Senate Committee on Public Health and Welfare that same day.
According to the text of the bill, it is “providing for the legal use of cannabis for certain debilitating medical conditions; providing for the registration and functions of compassion centers; authorizing the issuance of identification cards; establishing the compassion board; providing for administration of the act by the department of health and environment.”
“It’s about time we address this issue,” Haley said. However, he believes committee Chairperson Sen. Mary Pilcher-Cook (R-Shawnee) opposes the measure and will likely try and block it from coming to a committee vote.
“It was an informational hearing only and not on a particular bill,” Pilcher-Cook said of this week’s testimony. “We heard from advocates for marijuana and non-advocates for marijuana, one day of hearings for each position. I appreciated hearing from Kiley and Gavin Klug and I hope to learn much more about possible solutions for their family.”
An identical bill, House Bill 2011, was introduced the same day as its Senate counterpart by Rep. Gail Finney (D-Wichita) and sent to the Health and Human Services Committee. However, the act is not yet on the House calendar.
“It’s important for people to have their voices heard,” Finney said. “We need an open debate. We can’t keep ignoring this.”
Finney cited a Survey USA poll that indicated 70 percent of Kansans supported legal medical marijuana. This was up from an earlier survey in which the approval rating was 50 percent.
“Hopefully, Kansas will be a little more progressive,” Finney said.
However, she fears it may suffer the same fate as the Senate version. House Human Services Committee Chairman Rep. Daniel Hawkins (R-Wichita) doesn’t see it as priority so it may not see the light of day.
This doesn’t mean the idea is dead on arrival, Finney said. Some portions of it could wind up as floor amendments to other legislation.
Rep. John Edmonds (R-Great Bend) sits on the Health and Human Services Committee.
“I’m not particularly excited about it,” Edmonds said. He has concerns about the medicinal effectiveness of cannabis and about this being a gateway to broader legalization of marijuana.
But, “it may have its place,” he said. “It is worthy of study.”
A heart-breaking tale
The Klugs have at least one ally in Topeka.
Although the action Wednesday and Thursday was in the Senate, Rep. Basil Dannebohm (R-Ellinwood) is championing the cause on the other end of the Statehouse.
“Kiley and Owen’s story just breaks your heart,” Dannebohm said. “Owen isn’t alone. These kids just cry for help.”
As the 113th District’s freshman representative, Dannebohm has taken up the Klug’s cause. “I want to do what I can to help,” he said.
Dannebohm isn’t talking about openly legalizing pot and he’s not talking about drug addicts lurking in the shadows. “I don’t want to see dispensaries pop up on every corner” and see Kansas become another Colorado.
“These are not seedy, back-alley people,” he said of the afflicted families. “They are not looking for a fix. They are just looking to help their children.”
The bill in its current form will probably not go very far, Dannebohm said. “It is very wide and it needs to be more precise.”
But, as he told the Klugs, Rome wasn’t built in a day.
“What this has done is open the door to a conversation,” he said. “That will be good.”
Crafting a final bill will require dialogue, compromise and research. Sadly, it will also take time, which is something that Owen may not have.
“We are on a journey here,” Dannebohm said.
He realizes he is taking a political risk with the issue. “There are some in my district who are opposed to medical marijuana,” he said.
“But, who am I to stand in the way of parents seeking relief for their children,” he said.
It’s not just his home 113th District that is split on the topic, he said. “It’s an incredibly divided subject. We’re an incredibly divided Legislature.”
Dannebohm suffers from Parkinson’s disease, an illness he is keeping in check with his current medications. So, whether or not medical cannabis would benefit him or other Parkinson’s patients is not at issue.
“I’m not fighting for myself,” he said. “I am fighting for a young boy in Odin.”