Jacob Redmond
Well-Known Member
Lora and Roger Barbour say they're fighting for their daughter's life.
Genny Barbour, 16, is autistic and epileptic. The epilepsy can result in multiple seizures every day.
The Barbours started administering medical marijuana to Genny in September to ease the number and severity of seizures. The treatment appears to work, the family says.
But as the hours go by, the effects begin to wane.
Another dose means more time Genny has without seizures. Missing that next dose, her parents say, means a return of her seizures, more aggressive behavior — or worse.
"I can't tell you how many times she's had such a hard seizure that I've prayed to God, 'Dear Lord Jesus Christ, please do not take my daughter today,' thinking she's going to expire right in front of me," Roger Barbour said.
"We hear thuds in our house and we all go running," Lora Barbour added. "A thud in our house means Genny went down."
Genny's situation has led to a legal battle.
Court date looms
Genny attends the Larc School, a private school in Bellmawr for children with disabilities.
The Barbours give their daughter four doses of medical marijuana — prepared in liquid form — each day. The first dose comes about 7 a.m., before Genny leaves for school. The next dose is set for noon, while she's in school.
"There were horrible behaviors in the afternoon and more seizures," her father said. "They were locking her in a restraint chair. She was throwing tantrums, biting herself, giving herself bruises. ... The doctor, along with us, came to the conclusion that it (medical marijuana) was wearing off."
Genny's doctor prescribed another dose at noon, Barbour said.
But officials won't let the teenager have her noon treatment. Attorneys for the Maple Shade School District — her home district — have told the Barbours it's against state law to administer medical marijuana on school grounds, Roger Barbour said.
"She has to get (the next dose) before the school day ends. The school's refusing to let her have that little bit of oil at school," Barbour said.
In December, the Barbours asked the Office of Special Education of the state Department of Education to allow Genny to take her mid-day dose at school. That was denied and the family sought relief through the Office of Administrative Law.
Administrative Law Judge John S. Kennedy made his ruling in January, again siding with the school and district.
The Barbours are now taking an appeal back before Kennedy. On June 25, they'll again seek permission for their daughter to be treated with medical marijuana at school.
The result of that hearing may not end the legal tussle — either side can file an appeal with the federal court in Camden or to the New Jersey Appellate Division in Trenton.
But the battle could set the pace for other families in similar situations.
Compromise offered, rejected
"Any seizure can kill Genny. I think I'm going to win," said Barbour, an attorney, who is representing his family in court.
Since April, Lora Barbour has been picking Genny up at school at noon and taking her home for the next treatment.
The impact is evident, the Barbours say. Genny recently went eight days without a seizure "and this is a girl who has seizures at least every other day," Roger Barbour said.
However, Genny is still missing a half-day of her education. And that's worth the legal fight, the Barbours said.
The Barbours said a school board attorney offered a compromise that would allow Genny's mom to pick her up at noon, take her off campus for treatment and then return her to school.
The family rejected the compromise, arguing the disruption to Genny's routine could spur more behavioral issues. Genny might not adjust to going home in the middle of the day and then quickly returning to school. Instead, the Barbours want permission for Lora Barbour to meet Genny at the nurse's office each day, give their daughter the treatment and allow her to return to class.
New Jersey legalized marijuana use for certain medical conditions, including seizure disorders, but cannabis is still classified as a Schedule I drug under federal law, which means the federal government considers it a dangerous substance with no medicinal value.
Earlier this year, U.S. Sen. Cory Booker, D-NJ, Sen. Rand Paul, R-Ky., and Kirsten Gillibrand, D-NY, introduced the Compassionate Access, Research Expansion and Respect States Act, or CARERS Act.
If enacted, the legislation would make it illegal for federal agencies to interfere with state laws permitting medical marijuana and would reclassify marijuana as a Schedule II drug,
And in Colorado, a bill passed recently called "Jack's law" allows for children to take non-smokable forms of the drug at school.
That bill is named for 14-year-old boy Jack Splitt, who has spastic quadriplegic cerebral palsy and was wearing a cannabis patch at school. His personal nurse who is with him at school all day was carrying cannabis oil. The medications were confiscated and his mother was warned they couldn't be on the school grounds.
Fighting the battle
The Barbour family — which includes 12-year-old Marlee, Genny's, healthy, athletic younger sister — said they turned to cannabis oil only as a last resort.
Genny has spent most of her life on pharmaceutical drugs, which often left her in a catatonic state. There was talk of more surgery, which may have left her partially paralyzed, or stronger drugs, which could have impacted her kidneys or liver.
"We have taken all the drugs that are safe for her," her mother said. "The fourth option was medical marijuana. That's what made us go on this road because that was the most reasonable. You're giving your 16-year-old child marijuana, but it's medicine. It's the best medicine that's ever worked."
Lora Barbour picks up the marijuana from the dispensary in Woodbridge. At home, she uses a grinder to make a fine powder, then cooks it down for 30 minutes, activating the cannabis.
The cooked-down marijuana is bagged in cheesecloth and bathed in coconut oil in a crockpot for three hours. The result is cannabis oil that Lora Barbour administers to Genny through a dropper or mixed in with soda.
"I can go to the drug store in town to get my oxycodone and my vicodin, which I'm prescribed for five blown discs and a neurological condition," Roger Barbour said. "But my daughter has to go to some alternative treatment center to get her medicine. It's equal protection of the law violation."
Genny isn't the only local girl fighting the battle.
Tatyana "Tuffy" Rivera, a Camden County girl, was diagnosed with a severe form of autism at 10 months. It once caused her to have 300 seizures per day. Tuffy, 8, attends the same school as Genny, and her father Ricardo Rivera also administers medical marijuana to help ease her seizures.
Tuffy uses a similar treatment of cannabis oil.
While she's improved on her regular dosage schedule, Rivera said since Tuffy is not allowed to take her medical marijuana on school grounds, he's seen some regression.
"She's now having seizures because she's not getting her dosage every five hours like she's supposed to," he said. "She's now having more seizures at school than she does at home. ... It's important to understand how severe these seizures are. They can kill her."
'She's doing so well'
On a recent June day, Genny — a striking girl with blonde hair and bright blue eyes — notices visitors when she comes home from school.
"Hi," she says before sitting down to eat her mac-and-cheese lunch. That's been her fixation of late, Lora Barbour said. It used to be potato salad, which her mother made every day for months.
"She gets hooked on food," her dad said with a smile.
Lora Barbour brings out a pink book with all of Genny's information from the time she was born. It shows baby pictures and her height and weight at birth: 7 pounds 10 ounces at birth and 20½ inches long.
"We had a normal birth. She was a completely healthy baby; a beautiful baby," Lora Barbour said.
But soon they noticed her eyes would turn to the side and her arms would jerk at times as if she was surprised by something. Doctors diagnosed her with infantile spasms.
Genny had surgery at 2 in an effort to try to quell the seizures. Doctors removed part of her right frontal lobe but the seizures continued.
"She doesn't really talk," Lora Barbour said. "She's 16 — she's like a 2-year-old. Recently she started saying 'I love you Momma' and I said 'I love you Gennbees.' We would go back and forth; so that was conversation. It started a month ago. It broke our heart," Lora Barbour said. "She did it to Roger first. She came up to him. He was working in his computer room and she goes 'I love you Dada.' He goes. 'I love you too.'
Terri Sautter, an applied behavior analysis teacher who worked with Genny for 10 years, is also visiting on this day.
Sautter greets Genny when she comes in from school and sits with her while she watches cartoons and colors.
"The district hired her," Lora Barbour said of Sautter. "Because of the lawsuit, they got rid of her and the consultant Stephanie Hicks. I had the 'A' team for years. As soon as this lawsuit comes in, they're looking at us with a fine-tooth comb and they say, 'Get rid of these girls,' that they're advocating for us."
The school district has not returned several messages seeking comment for this report.
Sautter says she still visits because she cares about Genny and the family.
"They asked me to babysit a couple of weeks ago, I haven't seen her in about two weeks," Sautter said. "I don't want her to think I just left her after 10 hours a week for 10 years."
She's noticed an improvement with Genny since she began taking the medical marijuana. There were times prior to it that she'd sit in a living room chair and just spin.
Now, "the alertness, she's starting to sing again and her talking, receptive skills, finding things, out playing basketball, doing bubbles, going for walks. She's doing so well."
News Moderator: Jacob Redmond 420 MAGAZINE ®
Full Article: Parents: Let our teen take medical marijuana
Author: Celeste E. Whittaker
Contact: cwhittaker@gannettnj.com
Photo Credit: John Ziomek
Website: Courier-Post | South Jersey local news, video, photos, entertainment, community information, and classifieds | courierpostonline.com
Genny Barbour, 16, is autistic and epileptic. The epilepsy can result in multiple seizures every day.
The Barbours started administering medical marijuana to Genny in September to ease the number and severity of seizures. The treatment appears to work, the family says.
But as the hours go by, the effects begin to wane.
Another dose means more time Genny has without seizures. Missing that next dose, her parents say, means a return of her seizures, more aggressive behavior — or worse.
"I can't tell you how many times she's had such a hard seizure that I've prayed to God, 'Dear Lord Jesus Christ, please do not take my daughter today,' thinking she's going to expire right in front of me," Roger Barbour said.
"We hear thuds in our house and we all go running," Lora Barbour added. "A thud in our house means Genny went down."
Genny's situation has led to a legal battle.
Court date looms
Genny attends the Larc School, a private school in Bellmawr for children with disabilities.
The Barbours give their daughter four doses of medical marijuana — prepared in liquid form — each day. The first dose comes about 7 a.m., before Genny leaves for school. The next dose is set for noon, while she's in school.
"There were horrible behaviors in the afternoon and more seizures," her father said. "They were locking her in a restraint chair. She was throwing tantrums, biting herself, giving herself bruises. ... The doctor, along with us, came to the conclusion that it (medical marijuana) was wearing off."
Genny's doctor prescribed another dose at noon, Barbour said.
But officials won't let the teenager have her noon treatment. Attorneys for the Maple Shade School District — her home district — have told the Barbours it's against state law to administer medical marijuana on school grounds, Roger Barbour said.
"She has to get (the next dose) before the school day ends. The school's refusing to let her have that little bit of oil at school," Barbour said.
In December, the Barbours asked the Office of Special Education of the state Department of Education to allow Genny to take her mid-day dose at school. That was denied and the family sought relief through the Office of Administrative Law.
Administrative Law Judge John S. Kennedy made his ruling in January, again siding with the school and district.
The Barbours are now taking an appeal back before Kennedy. On June 25, they'll again seek permission for their daughter to be treated with medical marijuana at school.
The result of that hearing may not end the legal tussle — either side can file an appeal with the federal court in Camden or to the New Jersey Appellate Division in Trenton.
But the battle could set the pace for other families in similar situations.
Compromise offered, rejected
"Any seizure can kill Genny. I think I'm going to win," said Barbour, an attorney, who is representing his family in court.
Since April, Lora Barbour has been picking Genny up at school at noon and taking her home for the next treatment.
The impact is evident, the Barbours say. Genny recently went eight days without a seizure "and this is a girl who has seizures at least every other day," Roger Barbour said.
However, Genny is still missing a half-day of her education. And that's worth the legal fight, the Barbours said.
The Barbours said a school board attorney offered a compromise that would allow Genny's mom to pick her up at noon, take her off campus for treatment and then return her to school.
The family rejected the compromise, arguing the disruption to Genny's routine could spur more behavioral issues. Genny might not adjust to going home in the middle of the day and then quickly returning to school. Instead, the Barbours want permission for Lora Barbour to meet Genny at the nurse's office each day, give their daughter the treatment and allow her to return to class.
New Jersey legalized marijuana use for certain medical conditions, including seizure disorders, but cannabis is still classified as a Schedule I drug under federal law, which means the federal government considers it a dangerous substance with no medicinal value.
Earlier this year, U.S. Sen. Cory Booker, D-NJ, Sen. Rand Paul, R-Ky., and Kirsten Gillibrand, D-NY, introduced the Compassionate Access, Research Expansion and Respect States Act, or CARERS Act.
If enacted, the legislation would make it illegal for federal agencies to interfere with state laws permitting medical marijuana and would reclassify marijuana as a Schedule II drug,
And in Colorado, a bill passed recently called "Jack's law" allows for children to take non-smokable forms of the drug at school.
That bill is named for 14-year-old boy Jack Splitt, who has spastic quadriplegic cerebral palsy and was wearing a cannabis patch at school. His personal nurse who is with him at school all day was carrying cannabis oil. The medications were confiscated and his mother was warned they couldn't be on the school grounds.
Fighting the battle
The Barbour family — which includes 12-year-old Marlee, Genny's, healthy, athletic younger sister — said they turned to cannabis oil only as a last resort.
Genny has spent most of her life on pharmaceutical drugs, which often left her in a catatonic state. There was talk of more surgery, which may have left her partially paralyzed, or stronger drugs, which could have impacted her kidneys or liver.
"We have taken all the drugs that are safe for her," her mother said. "The fourth option was medical marijuana. That's what made us go on this road because that was the most reasonable. You're giving your 16-year-old child marijuana, but it's medicine. It's the best medicine that's ever worked."
Lora Barbour picks up the marijuana from the dispensary in Woodbridge. At home, she uses a grinder to make a fine powder, then cooks it down for 30 minutes, activating the cannabis.
The cooked-down marijuana is bagged in cheesecloth and bathed in coconut oil in a crockpot for three hours. The result is cannabis oil that Lora Barbour administers to Genny through a dropper or mixed in with soda.
"I can go to the drug store in town to get my oxycodone and my vicodin, which I'm prescribed for five blown discs and a neurological condition," Roger Barbour said. "But my daughter has to go to some alternative treatment center to get her medicine. It's equal protection of the law violation."
Genny isn't the only local girl fighting the battle.
Tatyana "Tuffy" Rivera, a Camden County girl, was diagnosed with a severe form of autism at 10 months. It once caused her to have 300 seizures per day. Tuffy, 8, attends the same school as Genny, and her father Ricardo Rivera also administers medical marijuana to help ease her seizures.
Tuffy uses a similar treatment of cannabis oil.
While she's improved on her regular dosage schedule, Rivera said since Tuffy is not allowed to take her medical marijuana on school grounds, he's seen some regression.
"She's now having seizures because she's not getting her dosage every five hours like she's supposed to," he said. "She's now having more seizures at school than she does at home. ... It's important to understand how severe these seizures are. They can kill her."
'She's doing so well'
On a recent June day, Genny — a striking girl with blonde hair and bright blue eyes — notices visitors when she comes home from school.
"Hi," she says before sitting down to eat her mac-and-cheese lunch. That's been her fixation of late, Lora Barbour said. It used to be potato salad, which her mother made every day for months.
"She gets hooked on food," her dad said with a smile.
Lora Barbour brings out a pink book with all of Genny's information from the time she was born. It shows baby pictures and her height and weight at birth: 7 pounds 10 ounces at birth and 20½ inches long.
"We had a normal birth. She was a completely healthy baby; a beautiful baby," Lora Barbour said.
But soon they noticed her eyes would turn to the side and her arms would jerk at times as if she was surprised by something. Doctors diagnosed her with infantile spasms.
Genny had surgery at 2 in an effort to try to quell the seizures. Doctors removed part of her right frontal lobe but the seizures continued.
"She doesn't really talk," Lora Barbour said. "She's 16 — she's like a 2-year-old. Recently she started saying 'I love you Momma' and I said 'I love you Gennbees.' We would go back and forth; so that was conversation. It started a month ago. It broke our heart," Lora Barbour said. "She did it to Roger first. She came up to him. He was working in his computer room and she goes 'I love you Dada.' He goes. 'I love you too.'
Terri Sautter, an applied behavior analysis teacher who worked with Genny for 10 years, is also visiting on this day.
Sautter greets Genny when she comes in from school and sits with her while she watches cartoons and colors.
"The district hired her," Lora Barbour said of Sautter. "Because of the lawsuit, they got rid of her and the consultant Stephanie Hicks. I had the 'A' team for years. As soon as this lawsuit comes in, they're looking at us with a fine-tooth comb and they say, 'Get rid of these girls,' that they're advocating for us."
The school district has not returned several messages seeking comment for this report.
Sautter says she still visits because she cares about Genny and the family.
"They asked me to babysit a couple of weeks ago, I haven't seen her in about two weeks," Sautter said. "I don't want her to think I just left her after 10 hours a week for 10 years."
She's noticed an improvement with Genny since she began taking the medical marijuana. There were times prior to it that she'd sit in a living room chair and just spin.
Now, "the alertness, she's starting to sing again and her talking, receptive skills, finding things, out playing basketball, doing bubbles, going for walks. She's doing so well."
News Moderator: Jacob Redmond 420 MAGAZINE ®
Full Article: Parents: Let our teen take medical marijuana
Author: Celeste E. Whittaker
Contact: cwhittaker@gannettnj.com
Photo Credit: John Ziomek
Website: Courier-Post | South Jersey local news, video, photos, entertainment, community information, and classifieds | courierpostonline.com
