MAPLE SHADE — The Genny Barbour who would arrive at school was docile, attentive and pleasant. The Genny Barbour who would step off the bus at the end of the day was irritable and aggressive. On the worst days, her arms would be covered with self-inflicted bruises from trying to escape the chair used to restrain her.

Roger and Lora Barbour of Maple Shade say they know what was happening to their 16-year-old daughter, who has epilepsy and autism: her medicine was wearing off during the school day.

The problem is that Genny's medicine is medical marijuana, and school officials say it's illegal to administer it to her on school grounds.

UPDATE:

Parents of N.J. student fighting to use medical marijuana oil reject school compromise

It's prompted a landmark legal battle that could reverberate in New Jersey and beyond. The Barbours are suing for their daughter's right to use medicinal marijuana in school, while attorneys for the Maple Shade school district say doing so would run afoul of the law because marijuana is still considered a controlled dangerous substance by the federal government with no medicinal value.

"She could have Valium or oxycodone, but not medical marijuana. Other children can take their medicine. My daughter cannot," Roger Barbour said. "My daughter is a citizen of this state, and this is a violation of her state and federal constitutional rights."

Genny had long suffered from frequent and severe seizures because of her medical condition, leading the Barbours to join a small but growing group of desperate parents in the country who have turned to marijuana as a last-resort treatment for their relentlessly sick children. In August, Genny began taking an eye dropper-sized dose of her mother's homemade cannabis oil in a small glass of cola in the morning, after school, and before bedtime. The number of seizures diminished, except in the afternoon. Her doctor recommended she also take a fourth dose with lunch, according to her medical records.

When her parents asked permission, the answer was a fast and flat no from the Maple Shade school district and the Larc School, the private school Genny attends for children with developmental disabilities in Bellmawr, according to court records.

The Barbours say in nine months, edible cannabis appears to have achieved what brain surgery, dozens of pharmaceuticals and a restricted diet have failed to deliver for their daughter: control over the frequency and intensity of her seizures. Cannabis has enabled Genny to be more attentive, verbal, and calm enough to enjoy her favorite past times of curling up on the couch to watch Disney cartoons or listen to music.

"There has been a total change in my daughter," Lora Barbour said. "She is more of a person."

LOSING THE FIRST ROUND

New Jersey's medicinal marijuana law allows minors to participate in the program, but is silent on whether they can use it on school grounds.

"This can't be the situation the legislature contemplated. A child is legally obligated to go to school," said Tamar Todd, director of Marijuana Law and Policy for the Drug Policy Alliance, a national group that lobbies to change drug laws. She said a courtroom showdown was inevitable, with medicinal marijuana is legal in 23 states and the District of Columbia.

The Barbours lost the first round in state administrative court in January when a judge sided with the school district and the school. The family appealed, but must face the same judge who turned them down, said Roger Barbour, Genny's father and a lawyer representing his daughter and wife, who is Genny's registered medical marijuana caregiver. He said he expects the battle to wind up in federal court.

He argues the school district has violated his daughter's legal rights as a disabled person to receive an education. The marijuana extract calms the "firestorm in her head" and allows her to learn, he said.

In his Jan. 5 decision, however, Administrative Law Judge John S. Kennedy ruled that the school and the district offered the more compelling legal argument. The Drug Free School Act and the New Jersey Compassionate Use Medical Marijuana Act conflict with each other, Kennedy wrote. He also pointed out that no one at the school is Genny's designated caregiver — the only person who can administer her medicine, under the state law.

Barbour also failed to make a case that Genny would be "harmed" and suffer an increase in seizures if she couldn't have the midday dose, Kennedy wrote. Genny's attendance had vastly improved since she was getting the three doses of cannabis oil. "It is not at all certain G.B. will suffer an increase in the frequency of seizures," Kennedy wrote, noting the parents had not supplied sufficient documentation to prove the fourth dose was medically necessary.

The family was stunned by the decision. It implies the Barbours should be satisfied with the limited benefits medical marijuana has provided Genny, for the school's sake, her father said.

"My daughter could die from the seizures, and the judge said we haven't shown the harm?" he said.

During spring break the week of April 13, Genny reached a milestone: she was seizure-free for seven days — the longest stretch of time since she was three months old, according to her parents. By being home, she was able to receive the lunchtime dose of cannabis oil. Genny's parents have decided that until there is a resolution in the case, she will attend only half-days at Larc. They love her school, but they can't risk compromising her health, Lora Barbour said.

The Larc School in Belmawr, NJ. (John Munson | NJ Advance Media for NJ.com)

Her daughter has spent her life on a cocktail of drugs that were not even approved for children, and left her in a catatonic state, she said. Since they introduced medical marijuana, daily grand mal seizures, (now known as tonic-clonic seizures), are once a week occurrences, if not less, she said. So far there are no side effects aside from diarrhea when the treatments began, according to her medical records.

IN SOME SCHOOLS, 'DON'T ASK, DON'T TELL' POLICY

Some school officials and parents are avoiding a showdown by using an unspoken "don't ask, don't tell" policy, Lora Barbour said. She knows of parents who secretly mix cannabis oil into their child's lunch, or are working quietly with supportive teachers and school administrators who "look the other way."



A south Jersey mother who spoke to NJ Advance Media on condition of anonymity said her daughter has been allowed for months to bring an insulated bag containing cannabis-laced yogurt to the school nurse who watches her daughter consume it at lunch. She said school officials were "thrilled and very supportive" when she approached them with the request.

"Her classwork has improved vastly," the woman said. "Is able to read on a 1st grade level, continues to retain math lessons and is able to type her spelling words on the computer. Every goal has been achieved."

The Barbours said they debated hiding the oil in Genny's lunch, "but we wanted to do the right thing," said Roger Barbour, son of the late George Barbour, a four-term state Assemblyman from Burlington County who headed the New Jersey Board of Public Utilities. "It boggles my mind — we can't be the only parents in the country willing to challenge this."

Although the Barbours may be the first to sue, patients and their families across the country are pushing schools to decide whether there is a place on campus for medicinal marijuana. Schools are pushing back, and in some cases, lawmakers are intervening.

A bill passed Monday by a legislative committee in Colorado that would grant a waiver for children to take non-smokeable forms of the drug at school. The bill is named "Jack's law" for Jack Splitt, a 14-year-old who uses a wheelchair and needs a ventilator to breathe because he has spastic quadriplegic cerebral palsy and the painful muscular disorder, dystonia. In February, a nurse at his high school peeled a cannabis skin patch off of his arm and confiscated a vial of cannabis oil from his personal nurse who attends school with him, his mother Stacey Linn said.

The Maine legislature is also considering a similar bill on behalf of parents group called Maine Children for Cannabis Therapy. Schools must "make reasonable accommodations" for children whose doctors recommend medical marijuana to consume non-smokeable forms of it during the school day, according to the legislation.

DOCTORS STILL QUESTION IT

The blatant conflict between state and federal law is not the only barrier between students having unfettered access to medical marijuana at school. In the court of public opinion, the issue makes many physicians squeamish. The American College of Pediatrics does not support the use marijuana as a therapy for children.

Krista Lisdahl, director of the brain imaging and neuropsychology lab at University of Wisconsin-Milwaukee, led a discussion at last summer's American Psychological Association convention about evidence that pot can interfere with teenagers' memory, attention span, and shave off some IQ points, according to an association press release. "It needs to be emphasized that regular cannabis use, which we consider once a week, is not safe and may result in addiction and neurocognitive damage, especially in youth," she said.

Sharon Levy, the director for the Adolescent Substance Abuse Program at Boston Children's Hospital and an assistant professor of Pediatrics Harvard Medical School, said she doesn't understand why parents are okay with giving their kids "a crude form of marijuana." Their focus should be on lobbying for more research of cannabinoids, the active ingredients in the cannabis plant.

"Marijuana is not prescribed but loosely 'recommended' by a physician. There is no standardization of dose, formulation or product," Levy added. "I cannot imagine a school taking on the responsibility of administering such a product."

Last week, the Larc School and the Maple Shade School district sought guidance from acting Attorney General John Hoffman and the county prosecutors in Burlington and Camden County counties, where the Barbours live and Genny attends school, respectively.

SCHOOL DISTRICT SEEKS GUIDANCE

"Given the relatively new nature of (the law), I would appreciate your guidance and advice on the following questions," school board attorney Patrick J. Madden wrote in an April 22 letter. "Does the (law) permit the storage of medical marijuana on the grounds of the school? Would the school's nurse be insulated from criminal or civil liability for her administration of medical marijuana? "

The district also asked whether the student's parent could come to the school and administer the drug far enough off campus so they wouldn't violate drug-free school zone laws, and return her to school. The school and the parents discussed this idea initially, but the Barbours say the school withdrew it, and they, too, had qualms because it would interrupt her routine and cause behavior problems.

Genny Barbour's mother Lora measures out her medical marijuana doses at lunchtime. 4/10/14 Maple Shade, NJ (John Munson | NJ Advance Media for NJ.com)

Madden declined to be quoted for this article and the school's attorney did not return calls seeking comment. Maple Shade Schools Superintendent Beth Norcia said "as a parent, I sympathize," and said she recognized however it is ultimately decided, the Barbours have filed a "ground-breaking and a historic type of lawsuit." She declined further comment.

The state Department of Education declined to comment. State Health Department spokeswoman Donna Leusner said the department, which runs the medicinal marijuana program, had not been contacted by any school district to inquire about students using medical marijuana on campus.

State Sen. Nicholas Scutari (D-Union), one of the prime sponsors of the New Jersey Compassionate Use Medical Marijuana Act, said he never could have imagined that children who were sick enough to qualify for the program would be prevented from receiving their medication.

"That's outrageous," Scutari said. "It's medication, and as long as it is under the direction of a New Jersey licensed doctor, how can a local school district do this?"

CALM AMID THE CHAOS

Genevieve "Genny" Barbour, the first of the couple's two children was born healthy. "She was just starting to laugh and smile," said her mother. "All of that shut off with the seizures." She was three months old.

At 2-1/2, she had part of her brain removed at Children's Hospital of Philadelphia in an unsuccessful attempt to arrest the seizures. By age 4, she was diagnosed with autism spectrum disorder.

About that time, the Barbours had another daughter, Marlee, who is a healthy, athletic 12-year-old. Raising the girls has been an exercise in daily triage.

Lora Barbour shares a bed with her oldest daughter to prevent her head from getting caught between the mattress and the bed railing. Genny will often wake up with a seizure, gasping for breath. When they are not in the same room together, Lora keeps an ear out, waiting for the sound of the "thud" of Genny's body hitting the floor as she convulses.

"When you hear a thud, your heart stops," Lora Barbour said. "I used to hear those thuds daily."



Marlee's passion is softball and her parents work hard to encourage her because "we have another daughter who deserves a normal life," their mother said. But a family outing to one of Marlee's games is a choreographed effort, with each parent running back and forth to see her play while the other stays with Genny, who on a good day can spend about 20 minutes at the ball field.

Against the chaotic backdrop, medical marijuana is a calming and steadying addition, the family says.

"We've all gotten used to it," Marlee said of her sister's edible marijuana. "It's good for her. It helps her seizures and if she doesn't take it, it's out of control and we can't stop them."

Lora Barbour buys the cannabis from the Garden State Dispensary in Woodbridge, and using a recipe from another parent with a sick child, she extracts the active ingredients using coconut oil and coffee filters, cooking it down in her oven and crockpot.

The Barbours didn't hide from the school that Genny was using cannabis at home. Her teachers saw the improvement — she was finally able to count to 10, identify colors, and speak in longer sentences. But after school officials declined to let Genny consume the cannabis oil during the day, the family tried to make do with the three doses.

According to daily progress reports in February and March, Genny began flying into a rage, hurting herself and disrupting the class on many afternoons. She was strapped her into a specialized chair to restrain her, sometimes as many as four and five times an afternoon, according to the reports. Seizures returned.

The issue could be settled if Congress and the Obama administration agreed to reclassify marijuana as a beneficial drug worthy of study. But until that happens, families like the Barbours are left to fight their own battles. They say they not backing down from the fight, now they have glimpsed a happier Genny.

Last month, Roger Barbour said his daughter walked up to him and said, "I love you." It wasn't just the feelings behind the words that moved him, but her ability to speak more than one word at a time.

"There has to be some way to accommodate my daughter."



Susan K. Livio may be reached at slivio@njadvancemedia.com. Follow her on Twitter @SusanKLivio. Find NJ.com Politics on Facebook.

