ODIN, Kansas – “I think that it is great news that it’s out of the house, however it still has a long ways to go.”
Kiley Klug’s son, Owen, has a rare form of epilepsy called Dravet syndrome where he has 40 or more seizures a day.
It has taken a toll on Owen’s development.
“He has lost a lot of skills since this Dravet’s syndrome has gotten worse, he is immobile, non-verbal,” said Klug.
Kiley and her husband testified before lawmakers urging they pass a bill that would legalize hemp oil that could help Owen.
“We always have to keep him safe, it’s a 24/7 job to keep him safe when he does have a seizure and they are pretty constant right now he’s having 20 to 40 seizures in a day.”
Owen is on several medications that have serious side effects.
“He is taking onphie, If we need to take him off of it, he would go through withdrawals similar to that of heroin.”
Kiley says that hemp oil is the last and safest option for Owen.
“We don’t have a choice so what do you want us to do? Sit here and watch our kids die and not try our hardest to try anything that might help them.”
Now, the Klug family hopes the bill will pass in the senate and give Owen a chance at a better life.
“He’s the sweetest boy you’ll ever meet and I just hope that these governmental officials will do the right thing for him,” said Klug.
House Bill 2049 will now go up for a vote in the Senate