She already has had to bury her 17-year-old daughter Claire. Gwen Hartley's mission now is to have Kansas lawmakers help save the life of her 12-year-old daughter Lola.
Lola has up to 30 seizures a day due to spastic quadriplegic cerebral palsy, one of several conditions she suffers from. Hartley wants to try treating her with a cannabidiol (CBD) oil that contains tetrahydrocannabinol (THC), the psychoactive ingredient in marijuana, which is not legal in the state of Kansas.
"We have no other option, you know. This is my last chance to save Lola," Hartley said.
Lola also has microcephaly and asparagine synthetase deficiency, a genetic disorder that only affects 20 people worldwide. Claire, who died in December 2018, suffered from the same disorder.
"Our goal isn't to get our daughter high," Hartley said. "Our goal is to settle her brain ... simply to calm her so that she's able to learn and her body's able to relax and give her some peace."
After seeing "startling" results from other families who live in states where the combination CBD/THC oil is legal, Hartley is optimistic the treatment could help Lola.
Republican State Rep. Mark Schreiber from Emporia sponsored House Bill 2244, which would provide an affirmative defense if a person were charged for possessing the CBD oil containing THC.
The bill specifies that the oil must contain 5% or less THC and be tested by a third party. It also does not legalize the sale or production of THC oil in Kansas, which means users must travel out of state to Colorado or other states where it's legal to purchase the oil.
For the legal defense to be applicable, users must also obtain a doctor's letter stating their condition warrants the treatment and maintain their documentation showing the appropriate testing has been conducted.
"My purpose here is not a progression of statutes down the road. My purpose is to help folks like Gwen, Scott and Lola, to provide an option for some relief," Schreiber said.
Some law enforcement agencies oppose the bill, but Schreiber said a person possessing the combination oil can still be stopped and charged for the illegal substance. But if the person has the neccessary documentation, the case can go before a judge.
"It's not perfect, but it does provide an avenue to give them some options," Schreiber said.
Dr. Alfonso Romero-Sandoval is an associate professor of anesthesiology at Wake Forest School of Medicine. He researches the medical effects of cannabinoids and said that while he's empathetic to the Hartleys' situation, he cautions not to "rush into potential therapeutic options that are backed up only with anecdotal evidence."
Sandoval said CBD is effective in very limited cases, but sees potential for a case like Lola's.
"The scientific evidence for the medicinal use for CBD, is literally limited to treat complex seizure diseases in children that do not have a current treatment or that cannot be treated with anything that is currently available," he said.
But Sandoval also noted that scientific research shows young adults who use THC see hindered brain development and possible psychosis and addiction.
Epidiolex is a CBD oil that does not contain THC. It was recently been approved by the Food and Drug Administration to treat seizures, but Hartley said her daughter is not able to use it.
The Kansas bill has passed the House with bipartisan support. She's praying that the Senate will allow a vote on the issue.
Hartley said legislators seem to "understand the urgency," for this treatment and have embraced her family. But if it doesn't pass, Hartley is unsure what her next option would be.
"I don't want to break the law. I don't want to go get her what she needs, but when you've buried one child and the thought of having to bury another one, you know, I'm gonna have to give it some serious consideration," she said. "I'm terrified. Yeah, I really am."
Gwen Hartley, Rep. Mark Schreiber and Dr. Alfoso Romero-Sandoval spoke with Steve Kraske on a recent episode of KCUR's Up to Date. Listen to the entire conversation here.
Elizabeth Ruiz is an intern for KCUR's Up To Date. Contact her at firstname.lastname@example.org.