leni snow

Leni Young, with her father Wayne, spend some time in the snow. Leni is the namesake of the Alabama law that decriminalized possession of marijuana-derived CBD oil. (Submitted photo)

Unlike most states, Alabama does not allow the medical use of marijuana. But the state has recently passed laws allowing the use of some marijuana-derived extracts that can't get you high.

And Mark Coleman's testimony on his daughter's use of cannabidiol oil makes a compelling case for the drug's benefits.

Coleman's 15-year-old daughter, Mary Ann, has a severe case of autism. She doesn't speak and frequently tries to hurt herself - pinching her arms, slamming her head, biting whatever she can get into her mouth.

Then the Alabama legislature passed Leni's Law, which went into effect June 1, 2016, and Mary Ann's life improved "tenfold" since she began taking the CBD oil, her father said.

"I ordered my shipment three days before Leni's Law went into effect so it would be in the mailbox the day it started," Coleman said.

The law made it legal in Alabama for parents or guardians with a medical prescription to possess cannabidiol oil, which is derived from hemp but lacks most of the psychoactive properties of marijuana.

And what follows is something the U.S. Drug Enforcement Agency might say is impossible - given that the DEA lists marijuana as a Schedule 1 drug with no medicinal value.

"It used to be when Mary Ann had a meltdown at the house and had her self-injurious behaviors, the only thing I could do is move her to a safe place, which was the couch," said Coleman, a single parent raising Mary Ann in Birmingham. "And I would basically have to hold her arms down and keep her from slamming her head or biting herself. And that would last sometimes 30 or 45 minutes before she calmed down.

"I would leave that situation, I would be wringing wet with sweat and just exhausted mentally and physically. Mentally more than physically because it just tears you apart when you're watching your child hurt herself."

And then, the kicker.

"Since she started the cannabis oil," Coleman said, "I haven't had to go to the couch with her one time."

Federally banned

Alabama law decriminalized the use of "nonpsychoactive canndabidiol" for people like Mary Ann with certain debilitating medical conditions. But Alabama has not approved medical use of actual marijuana, which is today allowed in more than half of the states, including Florida and Arkansas.

Alabama law instead says that the marijuana-derived CBD oil must contain no more than 3 percent THC. That's the part of marijuana that produces a high, but at such a low percentage it's not strong enough to have that effect on consumers.

Yet that small percentage is still too much, according to recent DEA regulations. The federal government confirmed last year that CBD oil remains a federally banned Schedule I drug.

"Although it might be theoretically possible to produce a CBD extract that contains absolutely no amounts of other cannabinoids, the DEA is not aware of any industrially-utilized methods that have achieved this result," read a federal notice in December.

And as far as recreational or medical marijuana in Alabama, Leni's Law states: "It is the intent of the Legislature to maintain existing criminal prohibitions of marijuana, except as expressly provided in existing law or as expressly provided in this act."

Not a cure

CBD oil is not a miracle drug, according to Leni's mom, Amy Young.

Amy lobbied and put together a constituency that convinced Alabama lawmakers to decriminalize possession of CBD oil. It was a leap forward as the legislature the year before had required that the University of Alabama at Birmingham Hospital oversee limited distribution of CBD oil as part of Carly's Law.

"I wouldn't call it a miracle," Leni's mom said. "I would call it just another medical treatment option. It should be something that is in the toolbox. It's a medical treatment. Some people respond to different things. It should be an option that is available."

The simple analogy is this: Imagine if your child could benefit from a treatment, yet the law said that treatment was illegal.

That was Amy Young's world.

Now her 5-year-old daughter who once had so many seizures they were beyond counting has them so infrequently now that Amy described it as "rare." She loves to go sledding in the snow and shopping at Target, her mom said.

"She was in pretty dire shape before (the CBD oil)," Young said. "It was grim. There was not a lot of hope given."

Alabama medical marijuana 3.13.17 9 Gallery: Alabama medical marijuana 3.13.17

State Rep. Mike Ball, R-Madison, sponsored the Leni's Law bill last year in the legislature as well as the Carly's Law bill in 2014. He described working on those bills as "very much a spiritual experience."

The final version of the bill sailed through both the House and the Senate, receiving a collective 95 percent of the vote between both chambers with only seven lawmakers opposing it.

"It was so pure," Ball said. "Sometimes, things come up where you have to turn the political switch off and just forget about it. Just do the right thing and let the rough end drag. As the political switches went off, what was the right thing to do became clear."

The Young family said they couldn't afford to wait on Alabama lawmakers. They relocated from their Wetumpka home to suburban Portland in 2015 because of Oregon's more liberal marijuana laws. Oregon is one of eight states where recreational marijuana is now legal.

Amy just wanted that tool of CBD oil to be available for treatment. And Leni's Law was the result. It doesn't work for everyone, Amy said. Some patients have not experienced improvement.

Again, it's not a miracle drug.

"Our bodies all work differently," she said. "For some of us, the conventional pharmaceuticals work wonders. And this is not a cure by any means. It is a treatment. It is not something I could stop giving Leni without the fear of her seizures immediately returning."

Leni suffered what her mother described as a "pretty catastrophic stroke" before she was born. The seizures began when she was 7 months old and "immediately they were pretty life threatening."

"It is not going to fix what happens in her brain," Amy said of the CBD oil. "It is not going to regenerate those lobs or anything like that. It keeps her seizures at bay so that she has the ability to progress and to develop and learn and stops that constant damage that those things do."

There are now simple joys, such as Leni picking out which clothes she wants to wear or laughing in the snow or telling mom and dad when she is hungry or thirsty. Amy even said the family is no longer tethered to a cell phone signal for fear of Leni enduring another life-threatening seizure.

"We used to map out everywhere we went in terms of how close we were to the nearest hospital," Amy said. "I didn't leave the house sometimes for months at a time. Now she makes it very clear, she wants to go out."

Making a difference

Mary Ann's father keeps a spreadsheet, documenting the number of self-injurious incidents his daughter has each day. She is a day student at Glenwood Autism and Behavioral Health Center in Birmingham, which provides a daily report of how many times Mary Ann attempts to her herself.

The worst, one day, was more than 1,200 incidents, her father said.

"That works out to about one every 10 or 15 seconds," Mark said.

Mark's spreadsheet provides statistical evidence, he said, of how much CBD oil has helped Mary Ann.

In the last 145 days before she began taking CBD oil, her self-injurious incidents were about 23,000. In the first 145 days after she began taking the oil, her self-injurious incidents plummeted to about 10,000.

Not a cure, as Amy would say, but a tool in the toolbox. And for Mary Ann, the toolbox already had 18 pharmaceutical drugs that failed to consistently reduce her outbursts, her father said.

"Mary Ann would be institutionalized right now if it wasn't for Leni's Law," her father said. "There's no doubt in my mind. That's what I was considering."

Mark said he would like to see a further loosening of CBD oil restrictions because he sees benefits others have in states where the THC level is not capped.

"I think it could be even better but it is what it is," he said. "This is what the state has given me to work with and I've worked within those guidelines. I wish I could do more but I'm happy that I've helped Mary Ann have a better life. Her quality of life is just tenfold (better) from what it was before."

He no longer has to restrain his daughter so she won't seriously hurt herself. Those visits to the couch, as he said, aren't necessary anymore.

And that's good for Mary Ann, yes, but also for her father.

"You cannot believe what that does to your mental state," he said. "I can't tell you how many times I've just dropped down on the floor and cried like a baby after something like that."

That jumble of emotions, Amy understands. She keeps in close contact with the families who worked for Leni's Law and Carly's Law, who banded together into such a force that Ball said they knew more about the benefits of CBD oil than "the so-called experts."

Amy lives the joy of Leni's improvement each day along with the lives for others made better by the CBD oil.

"It's a gift I feel like we're not worthy of," she said. "To have played such a small part...I get messages all the time and I cry. Happy tears. To play a small role in other people having that same opportunity, it's amazing."