Parents seek support for cannabis oil bill
At only 4 months old, Amanda Franklin suffered her first seizure when her mother, Eugenia, laid her down for a nap one afternoon.
"I was lying on the bed with her and she just woke up jerking all over, her eyes rolled back in her head and it lasted about a minute. It scared me to death," Eugenia said.
It would only be the first of hundreds of episodes the little girl would have over the years. Now 24, Amanda's exact condition is still undiagnosed but the seizures continue.
"They've done genetic testing, and they can't really determine one specific syndrome or disorder. She's got a few characteristics of one thing and another, but the only diagnosis we can get is for seizure disorders," Eugenia said.
Over the years has tried 26 different medications to treat Amanda's seizures and she has undergone four brain surgeries. Her most recent surgery in 2005 lasted 15 hours as doctors implanted a deep brain stimulator as part of a trial.
"Nothing has helped," her mother said.
Doctors have told the family that it's only a matter of time before the strong medications take a severe toll on Amanda's body.
"It's so hard on her body, and eventually it's going to stop her heart," Eugenia said.
Her seizures have caused fits of sleeplessness. At one time, she was experiencing a type of seizure that made her collapse and caused her to break her arm and bite through her tongue. One of the surgeries corrected that type of seizure.
Now, Amanda mostly experiences grand mal seizures which send her into unconsciousness and violent muscle contractions that last from 45 minutes to an hour at a time.
When her immune system is low, the episodes are worse. While sick with a stomach virus about two weeks ago, Amanda suffered 40 seizures in 24 hours and had to spend the night at Mission Hospital.
"Both of her doctors, neurologists in Asheville and one at Emory, have told us that they are out of options. There is nothing else they can do for her," Eugenia said.
Now she and her husband, Harold, want access to a new kind of treatment that's currently illegal in most states, including North Carolina — cannabis oil.
Cannabis oil is very low in THC, the euphoric property that produces a high for marijuana users. But the oil is high in CBD, a property that has been shown to possibly quell extreme seizure disorders like Amanda's.
Eugenia first learned about cannabis oil after watching a CNN special called "Weed" that featured a story about a Colorado child who was having 100 seizures a day. The mother of the child pushed to have her doctor prescribe cannabis oil and according to the show, she is now down to about three seizures a month.
There is now a waiting list of people who want to try the oil as a last resort.
"You have to be a resident of Colorado to get it and there is family after family pulling up roots in places like North Carolina where it's not legal and moving just to get on a waiting list because they are like Amanda. They are out of options," Eugenia said.
Financial restraints make a drastic move across the country impossible for Amanda's family. The Franklins and many other parents of children with severe forms of epilepsy in the state are now lobbying for support from legislators to draft a bill that would allow them access to the prescribed drug.
Though there may be no one exactly like Amanda, Eugenia knows that there are other children out there who could also benefit from cannabis oil. Eugenia is a part of a Facebook group called North Carolina Parents for Pediatric Cannabis Treatment and has been writing letters and calling legislators in search of support.
Legislators in other states have begun to consider bills to allow the use of medical cannabis oil. The Georgia House of Representatives passed a bill in a 171-4 vote and it's now moving on to the Senate. A similar bill cleared the Florida House panel this week.
"It might not work, but the children in North Carolina ought to at least have the option to try. That's what we're advocating for," she said.
She is advocating that a bill be drafted so that the oil can be prescribed by a doctor. So far, Eugenia said she has spoken with both Rep. Joe Sam Queen and Sen. Jim Davis and gotten positive feedback.
"She has a really compelling story with her daughter and we need to be open to solutions for these patients. I would be willing to assist where I could in that regard and that's what I told her," Queen said.
Because cannabis oil does not produce a high, he said he would like to pursue a bill that treats the oil as a medication without turning it into a "hot button issue."
"If you can truly help somebody and not harm anyone else, you should do it," he said.
Davis said though he is "sympathetic to her plight," he is currently not in support of the legalization of any type of prescription marijuana.
"Law enforcement really seems to have a problem with this, and I am very reluctant to go against law enforcement's opinion on this," Davis said.
Right now he is in "wait and see mode" until he sees more definitive test results about how it affects driving while impaired cases in the state.
"When you say medical marijuana, a lot of people still think there are going to be a bunch of pot heads running around. But that's not what it is at all. There is no high associated with this drug. I'm not advocating for marijuana, that's the last thing I'm doing," she said.
Amanda has achieved much despite her disability and has won the hearts of nearly anyone who meets her. In 2012, her peers at Tuscola High School crowned her prom queen and she walked across the stage to accept her diploma.
She has so much potential, her parents wonder what she would be able to achieve if seizures didn't stand in her way.
"I think North Carolina has a responsibility to the children of their state to see if they can help them in whatever ways they can," Eugenia said.
She and her husband are fighting for this because they know there are no more options for their daughter. They want legislators to put themselves in their shoes.
"We want to ask, what would you do to save your child?" Harold said.