Roger and Lora Barbour fight to help their epileptic daughter Genny get access to her medication

By Sheila Cosgrove Baylis
May 07, 2015 05:40 PM
Courtesy Lora Barbour

Roger and Lora Barbour have seen their daughter, Genny, make incredible strides since they started giving her physician-prescribed medical marijuana last September to ease her seizures.

For one thing, she can now say “I love momma!” and “I love dada!” Before, Genny could only manage a single word at a time, like “eat,” “drink,” or “bathroom.”

“She blossomed into a child who, the other day, she walked into my office and said, ‘I love you,’ ” Roger, 50, of Maple Shade, New Jersey, tells PEOPLE. “My wife and I looked at each other, and both started crying.”

But Genny, 16, who has epilepsy and autism, needs a dose of medical marijuana oil four times a day to remain stable. If she misses a dose, she becomes agitated and even self-harming, her parents say.

Genny has tried various scheduled pharmaceuticals, but none have decreased the frequency of her seizures or helped her to be attentive in school the way the medical marijuana oil has, according to her parents.

Her teacher even contacted the Barbours to make her goals harder in her individual education plan because she’d mastered things like counting to ten, Roger says.

“This is the first time ever, since she’s been in school, that they’ve had to modify her goals and objectives to make them harder,” he says.

But Genny’s lunchtime dose has become an issue – though medical marijuana is legal in the state of New Jersey, the state law is silent on its use in schools; the Maple Shade School District says it’s illegal for them to administer it because marijuana is still illegal under federal law, and a New Jersey court agrees.

Administrative Law Judge John S. Kennedy ruled in January that The Drug Free School Act and the New Jersey Compassionate Use Medical Marijuana Act conflict with each other, NJ.com reports.

Kennedy wrote that no one at the school is Genny’s designated caregiver, and under state law, only the caregiver – her parents – can administer the medicine.

The school district declined to comment on the decision.

The Barbours have appealed and say they will fight all the way to the U.S. Supreme Court if they have to.

“We feel that Genny has the right under existing New Jersey law to take her medicine in school,” says Roger, a lawyer.

“We’re Not Drug Addicts”

It takes Lora about five hours to make Genny’s medicine, after driving 1½ hours each way to the dispensary to purchase about an ounce of marijuana for about $550.

To make the oil, which she does once or twice a month, she cooks the marijuana buds in the oven and mixes it with coconut oil that’s been heated in a crock pot.

Then, four times a day, Lora mixes one milliliter of the oil with cola for Genny to drink.

But the Barbours say all the effort and expense is worth it to see how much it helps their child. And Genny quickly declines when she misses a dose.

“We’ve been devastated,” Roger says. “We didn’t anticipate that this would be an issue. My wife, it took her so much time and effort to get Genny’s [medical marijuana] approval, to get her licensed, to get a prescription for her doctor, to get everything we needed.”

“I hear people say, ‘You just want to get your kid high, you want to bring drugs into school,’ ” says Lora, 49, who used to work as an executive travel agent, but now spends all her time caring for the family. “Well last year, Genny went through five new pharmaceutical changes.”

“She was so high [on the pharmaceutical drugs], that the school had to put a leather belt on her to make sure that she wasn’t bumping into walls and falling over,” she says. “Don’t tell me about getting high, my daughter isn’t getting high on cannabis.”

Roger and Lora, a usually-cheerful pair who finish each other’s sentences, admit it’s been a trying time.

“We cry a lot,” says Roger, who also suffers from Tolosa-Hunt syndrome, a neurological condition. “I’ve lost 30 lbs. in the last two years. It’s been a lot of stress.”

For the time being, Roger and Lora have decided Genny should only go to school half days, so she can receive her lunchtime dose.

“When she comes home with her mom, she’s a little grumpy,” Roger says. “But as soon as she gets her medicine, she’s her cheerful, loveable self for the rest of the day.”

When she was still full-time at the Larc School in Bellmawr, New Jersey, a private school for children with developmental disabilities, Genny would become so distressed without her medication that the teachers often restrained her, the Barbours say.

“For the first time ever, she became self-injurious,” Roger says. “She had horrible bruises all over her shoulders and arms, she chipped her tooth from biting her chair or herself so hard. It’s called a Rifkin chair. It’s a restraint chair.”

Protecting Genny from this sort of suffering is why the family is fighting so hard.

“We’re not drug addicts,” Roger says. “Our daughter’s not a criminal. We just want her to be able to take this medicine.”

Advertisement