Barron (WQOW) - The days of dancing, singing and silliness are diminishing for soon-to-be 12-year-old Destany Hanson of Barron, Wisconsin.
Her family is hopeful better days are ahead but, for them, that means the passing of Assembly Bill 49. That bill would make it legal to possess cannabidiol oil (CBD oil) with a doctor's certification in the state of Wisconsin.
March 3rd is Destany's 12th birthday, but her brain has barely aged since starting seizures at the age of five. "It would look like she would stare at you and it would look like she was looking right through you, like she didn't even see you," Destany's mother Nichole said.
Those first seizures quickly progressed and within months, her seizures had grown in number and intensity. At the peak, the Hanson's said Destany was having more than 100 seizures a day. Destany's doctor, Dr. James Doesher, a pediatric epilepsy specialist with the Minnesota Epilepsy Group, diagnosed her with intractable epilepsy. He explains that means many medications do not work well with her.
Adding to the diagnosis, Destany's seizures are nocturnal. "We had a period of eight months. She basically didn't sleep for the whole eight months," Destany's father Andy said.
Her parents told News 18 nocturnal seizures pose another problem: Destany rarely gets REM sleep. "Without REM sleep, she never converts short-term memory to long-term memory," Andy said. That leaves Destany starting over at the age of 5, everyday. Her mom said Destany knows most everything she was taught before the seizures started: she knows her colors and shapes, she can write her name but nothing else. Nichole said Destany doesn't read, and perhaps most troubling, recently, she has almost stopped speaking altogether.
Currently, Destany's seizures are down to four or five a night. But, that's only maintained by taking dozens of pills a day, many of which Destany has a hard time swallowing. The Hanson's said there was a period of time when Destany was having zero seizures a night. It was when their doctor enrolled her in a trial of CBD oil. The trial lasted only a month, but both her family and her doctor said it was one of the most beneficial therapies they tried.
The CBD oil trial has long since ended, but the Hanson's hold out hope and continue to pray that one day CBD oil will be able to help their daughter fulfill her destiny. “My goal for her, it's working really well like we feel it will, like I think it was trying [during the trial], is to just be on that and stop taking 20 to 30 pills a day of poison,” Nichole said.
The Hanson's said they're often asked why they don't move to a state where the oil is legal. They've said they've considered, and still are considering that option, but they worry moving will cause them to lose their support system in Barron, as well as have a negative effect on their other daughter, Faith. They said Faith is a straight-A student with ambitions to attend Stanford University.
The Hanson's also said many well-meaning friends suggest they buy the drug, though illegal, off the streets. The Hanson's said that isn't an option they would even consider because they need to know what they are putting in their daughter's body. “It needs to be a medication that you know what's in it, so you're not just giving random things to your daughter,” Nichole said. She said she would never try something that wasn't monitored by Destany's doctor.
Assembly Bill 49 is scheduled to be voted by the full Assembly on March 7. The Wisconsin Senate has already approved it. If approved by the Assembly, the bill will go to Governor Scott Walker's desk. He told News 18 on a recent trip to Eau Claire he would sign it into law if it came to him.
Nichole chronicles Destany's journey on Facebook. You can follow along at "Destany Determined".