Family in Issue 3 ad is real; so is the treatment they found for their 4-year-old daughter

CASTLE ROCK, Colorado – Amid Ohio’s intensifying campaign over legalizing marijuana, the face of Issue 3 is a green-eyed 4-year-old girl named Addyson Benton, who is learning to handle her Barbie trike.

“That’s the goal for this year, to get her to ride,” said Heather Benton, standing in the backyard of the rental house as Addyson slid into the seat, lifted her sunny face and beamed. “But it’s one thing at a time.”

Heather and Adam Benton have family, friends and a home in Butler County’s Liberty Township. Life revolved around rearing Addyson, who has myoclonic epilepsy. The disease has resisted what traditional medicine can offer. So in March, the Bentons spent their savings to become refugees, moving to Colorado simply to treat Addyson with the one thing that now gives them hope – medical marijuana.

“It’s like night and day,” Heather Benton said Tuesday, as Addyson played on the trike. “She is doing so much better now, it’s amazing. She was having 1,000 seizures a day. So far today, I’ve counted one.”

Addyson, while delayed in development, is catching up. She speaks single words more clearly and is building sentences. Her locomotion now is typical for her age. Her fine motor skills are sharpening: She repeatedly, precisely, dipped a plastic wand into a small bottle of blow-bubble liquid.

With their daughter’s rapid improvement, the Bentons found their move to Colorado taking on political colors. This month, the family appeared in TV advertisements on behalf of Issue 3, the ballot initiative that would legalize marijuana in the Buckeye State.

In the ad, Heather Benton says: “We want to move back to Ohio. But we can’t because her medicine is illegal there. It’s time for marijuana reform.”

Callers to The Enquirer wanted to know whether the Bentons were actors. Heather Benton said she got blowback from strangers accusing her of exploiting Addyson. Heather Benton brushed off the criticism.

“To me, as a mom, it would be wrong not to scream her story from the rooftops,” she said. “Our fight is much more than just coming back to Ohio. We’re fighting for all those families with sick kids who need access to the medicine that works.”

Among those families in Ohio are the Huddlestons of Colerain Township, whose 7-year-old son suffers from the same form of treatment-resistant epilepsy. Carolyn Huddleston said she and her husband face possible brain surgery for their child. “I at least want to be able to try medical marijuana for our son,” she said. “It’s that, or a surgery that may or may not help him.”

Medical refugees

In Colorado, the Bentons have plugged into a network of refugee families from around the nation. They provide advice on working Colorado’s system to get the “red card,” which allows a holder to obtain medical marijuana.

Heather Benton said she believes the best feature of Issue 3 is the most controversial – limiting the commercial crop to 10 grow sites around Ohio. “There are too many people concerned with their financial entitlement that they don’t see how important it is to have access to safe, tested, regulated medication,” she said. “The 10 farms get us there.”

The Bentons have not abandoned pharmaceuticals. Addyson takes a relatively small daily dose, about 500 milligrams, of the antiseizure drug Depakote. But Heather Benton hopes to wean Addyson to eliminate the side effects: weakness, nausea, drowsiness, tremors. Marijuana, she said, is making all the difference.

Marijuana contains several hundred active ingredients called cannabinoids that work in the human body like a key in a lock. The ingredient THC generates the psychoactive response – it’s what gets you high.

But in Addyson, THC induces a calming that can stop or even prevent seizures. When Addyson cries or is upset, her brain’s electrical system gets scrambled, triggering seizures. But Heather Benton said a touch of THC oil on Addyson’s gum brings the neural chain reaction to a halt.

On her foot, Addyson wears a transdermal patch, changed twice a day, with another ingredient of marijuana, THC-A. Heather Benton also has a pen that pumps a small dose of a gel with yet another ingredient that can be “rescue” medicine when Addyson’s brain cascades with seizures.

“The first day we applied the patch, we saw a difference,” Heather Benton said. “When we saw that, we were angry. Angry that we had to move to Colorado to get medicine that helps our daughter.”

Addyson Benton is under the care of Margaret Gedde, a Colorado Springs physician who since 2009 has dedicated her practice to helping patients use medical marijuana. The journey for a doctor, she said, is realizing that patients know more about marijuana than she does.

“I kept hearing from people about how they were using marijuana, and I was astonished,” Gedde said. “I have a Ph.D in chemistry, so I decided that I would be a scientist and ask everybody how this worked for them.”

Today, Gedde said she treated seizures in 400 patients, many of whom have moved to Colorado to get medical marijuana. She sees improvement in all of them. She expects that as long as Addyson uses marijuana, her prognosis brightens. Gedde believes the whole nation could respond the same way.

“Cannabis is the future of medicine,” she said. “There is a potential for cannabis to change medicine, to change how medicine is practiced.”

The prospect of Ohio legalizing marijuana could contribute to such a paradigm shift, Gedde said. As more patients use marijuana, more doctors get educated. “But then, of course, you’ll have people moving to Ohio.”

'I'll tell the world'

A Cincinnati Bengals doormat lies at the entrance to the Bentons’ rental house. Colorado is nice country, Heather Benton said, but it’s not home. Yet even if Ohio voters pass Issue 3, the Bentons will stay in Colorado until they can put together the money to return. And now, they face a new medical worry.

Years ago, Heather Benton said, she was successfully treated to remove precancerous cells on her cervix. But recent medical testing has returned mysterious results, and she requires a CT scan. She said she is prepared: “If it’s cancer, I can promise you, I will use medical marijuana first, and I’ll tell the world. I want to show that I can save my life with this so that I don’t have to kill myself with chemo.”

Suddenly, a cry arose from the backyard. On her Barbie trike, Addyson somehow scraped her heel to bleeding. Heather Benton scooped up her child and brought her into the house.

The crying went from distress to a piercing note of panic. This is where the child's seizures typically start and exponentially expand.

Heather murmured, “It’s all right, it’s OK, let’s check it out,” and sat the weeping Addyson on the kitchen counter. Heather examined the wound, found it superficial, wiped it and applied a green bandage. Addyson shrieked again.

Heather reached for the small bottle of THC oil, put a few drops on her fingertip and swiped Addyson’s gum. Addyson didn’t blink. In seconds, she stopped crying. She relaxed. She smiled.

“All done!” said Heather.

“All done!” Addyson chirped.

“High five?” Heather said, and Addyson smacked her palm. Then, suddenly tired, Addyson leaned against her mother. “Ready for a nap?” Heather asked. “Yeah,” Addyson replied, and as her mother carried her off to bed, she waved bye-bye.