Zoe Adams, 6, suffers from a fatal condition. Her parents say CBD oil provides relief. But administrators say their hands are tied.
As Sanfilippo syndrome tightens its grip on Zoe Adams’ 6-year-old body, mobility is an early casualty.
She once delighted in bouncing on the small trampoline her parents installed in the living area of their Edgewater home. Now, she picks her path across the floor on tiptoes and communicates in bursts of one or two words.
Zoe's fatal genetic condition is best explained in layman’s terms as childhood dementia. Her body lacks a critical enzyme needed to break down sugar. The resulting toxicity destroys cells and brain tissue.
It’s incurable, but J.J. and Kim Adams say they’ve found a supplement that soothes their daughter's symptoms.
More than a year ago, they began giving Zoe cannabidiol, a hemp oil commonly known as CBD and available over the counter in Daytona Beach. The difference in her behavior, J.J. said, was “like night and day.”
But their request that Zoe be allowed to ingest the controversial substance at school puts them at odds with district administrators who are unable to acquiesce without risking federal funding.
When Kim, 35, asked Edgewater Public School officials in March to administer CBD to stymie Zoe's seizures — a sign of the disease's progression — the Volusia County school administration balked.
Federal law prohibits school staff from administering the supplement, according to Nancy Wait, spokeswoman for Volusia County Schools. CBD oil is a “marijuana extract” and “remains listed as a Schedule I controlled substance under federal law,” Wait wrote in an email.
Medical marijuana is available in Florida but remains illegal under federal law.
Hemp contains only trace amounts of THC — the high-inducing ingredient in marijuana — and is non-psychoactive, according to the Medical Marijuana, Inc. website. Therein lies Zoe's parents' frustration.
“I think it’s senseless,” said J.J., 42. “If you weigh out the pros and cons, what are the cons? Show me the evidence. There are no cons, it’s all pros.”
'Not getting my daughter high'
Zoe was born with the rarest and most aggressive type of Sanfilippo syndrome. She appeared healthy at birth but began missing developmental milestones around age 3.
Before Zoe started taking CBD, she was constantly on the move — reaching, grabbing, unable to still her limbs. And she had slept no more than one or two hours a night since infancy. Kim and J.J. took turns staying awake with her.
They thought Zoe had autism initially. Then, last March, lab results revealed Zoe's extreme hyperactivity, sleep problems and behavioral issues were common symptoms of a much more serious genetic condition.
As Sanfilippo progresses, children lose their ability to speak, feed themselves and use the bathroom on their own. Their intellect fails, heart problems arise, hearing and vision fade away. Seizures, loss of mobility and dementia mark their final days.
Most sufferers don't survive their teens. Many die before then.
Kim hadn't yet learned the severity of Zoe's condition last February when friend Mike Mastella, co-owner of FLA420, a Seabreeze Boulevard purveyor of CBD-based products, suggested giving Zoe a supplement from his shop. She was skeptical at first.
“I’m not getting my daughter high,” Kim said to Mastella. But she brought some CBD-infused gummy rings home to sample. She and J.J. each ate one. They felt noticeably relaxed afterward, but not high.
Maybe CBD could soothe Zoe, too.
“The first time we put her on it she slept all night,” Kim said. With six extra hours of rest, Zoe's movements were more deliberate, less frenzied. The whole family relaxed into a more natural rhythm.
“She hadn’t been able to focus enough to get to our face and kiss us. Now, she sits and kisses us on the mouth,” Kim said. Zoe sat peacefully in her lap, cradling her cheeks and leaning in for successive smooches. Zoe's 8-year-old brother, Zane, watched from her trampoline.
“You don’t know how much you miss your child giving you kisses until she can’t kiss you because she can’t look at you,” Kim said.
J.J. and Kim started Zoe on a daily regimen of CBD — one dose in the morning, another after school was dismissed at 2 p.m. and a third in the evening.
Zoe’s teachers marveled at the change in her behavior. She was learning new things, memorizing vocabulary words. They even altered the way they quizzed Zoe to make sure it wasn’t a fluke, Kim said.
Kim told teachers Zoe simply was sleeping better. “Her heart and brain were resting because of the CBD oil,” said Kim.
It seemed like a miracle.
Then about six weeks ago, Zoe began having focal seizures, which occur when a portion of the brain is impaired. The Adamses had suspected her condition was deteriorating, but “we denied it for a couple of months because once (children with Sanfilippo syndrome) start having seizures, they only have a couple of months (to live),” said Kim.
At a parent-teacher conference, Zoe slid over sideways in her stroller. “I said, ‘Baby, are you tired?’ and put my hands on her face,” Kim recalled. “I kept talking to her and her eyes were shaking. She couldn’t move her head.”
She rolled Zoe out of the room and cried.
A controlled substance
An Orlando specialist prescribed Lamotrigine for Zoe, a drug used to treat epilepsy and bipolar disorder. But the specialist also warned of side effects such as a red, itchy rash — a risk Kim was unwilling to take.
“My child doesn’t know how to itch. She can’t talk to us and say, ‘I feel funny. I’m tired. I want to throw up,’” Kim said. She and J.J. instead decided to increase Zoe’s CBD oil intake to every three hours.
Kim started packing gummy ring candies with Zoe’s school snack each day — plus one gummy infused with CBD.
Again, Zoe's body responded. The seizures that shook Zoe three times daily have scaled back to just three in the past six weeks, Kim said.
The hitch happened March 7 when Kim ran out of gummies. She asked Zoe's teacher to administer sublingual CBD drops at snack time. The teacher referred Kim to the school nurse, who in turn consulted the school district's health services department.
Kim said she received a call from Debbie Fisher, health services coordinator, informing her the school could not administer non-FDA-approved substances such as CBD.
“The medication they are requesting their child receive at school is an abstract of cannabis oil,” Fisher told The News-Journal in a voice message. “The only thing I can say to you from a health services standpoint is there are federal guidelines preventing us from honoring (Zoe’s) parents’ request.”
Michael Dyer, general counsel for Volusia County Schools, determined the Adamses' request was in conflict with the U.S. Department of Justice controlled substances statute and that the school's complicity could have repercussions, Wait said. "We are going to follow federal guidelines. We receive federal dollars, and we don't want to be in any kind of jeopardy that could cause us to lose our funding."
Zoe’s situation is the first of its kind in Volusia County. “It may become an issue down the road," said Wait. "But our stance right now is that until the law changes, we cannot administer (CBD).”
A New Smyrna Beach doctor licensed to certify patients for medical marijuana use said prescription marijuana, which does contain THC, has proven useful in treating patients battling epilepsy, PTSD, cancer and other diseases.
For those with chronic pain and other conditions that do not legally qualify for medical marijuana, "it can be useful to use CBD over the counter," said Dr. Steven Watry. "I'm not aware of any significant consequences to taking it."
Although the substance can benefit people with epilepsy, Watry said, "to expect the school to administer it, that's a stretch. They don't even let students have antihistamines without a note from a doctor."
To compensate for the snack-time dose of CBD Zoe misses at school, Kim said she has been giving her an extra dose in the morning but worries Zoe's body may acclimate to the stronger serving and stop responding to smaller amounts.
'Proof is in the pudding'
Unlike medical marijuana, CBD oil does not require a medical card or physician supervision.
Johnny Marano, who co-owns FLA420 with Mastella, supplies Zoe's parents with CBD-infused edibles such as gummy rings and worms, honey and sublingual drops.
The items sold at his shop have “zero psychoactive effect,” said Marano.
Most of his customers are ages 50-80 and take CBD for pain or anxiety relief, he said. “Some people take pain pills or Xanax. This grows from the ground,” he said.
But Marano said he has several customers besides Zoe’s parents who seek out his products for children with autism or epilepsy.
“The proof is in the pudding — look at this little girl. CBD isn’t magic, but it is amazing,” Marano said.
A Drug Enforcement Agency news release in December 2015 announcing FDA-approved clinical trials on cannabidiol noted, “Because CBD contains less than 1 percent THC and has shown some potential medicinal value, there is great interest in studying it for medical applications.”
And Thursday, FDA advisers unanimously endorsed approval of Epidiolex, a drug that contains pharmaceutical-grade CBD for treatment of seizures associated with epilepsy in children.
The FDA has indicated it will make a final decision on the drug later this year.
Zoe's journey continues
J.J. said the advanced state of Zoe's disease precludes her from undergoing experimental procedures, but he wants to wage war in another arena.
He plans to push for legislation that would allow CBD use in schools nationwide.
“If it’s not going to save our daughter, it doesn’t mean Zoe’s journey is going to end there,” he said. “I want to do it not only for Zoe but for other kids.”
The Adamses are counting down to the day Kim has to quit her job as office manager at Borland-Groover Clinic in Port Orange to care for Zoe full time, which will mean a $50,000 annual reduction in their household income.
But until then, “I want (Zoe) to have friends and play and mingle and have fun,” said J.J, a Boston Whaler quality inspector. “I just want her to live a normal life as much as she can.”
Zoe’s fleeting moments weighed heavy on his heart when the Adamses received word that another child in Florida’s tight-knit community of Sanfilippo-affected families had succumbed to the disease the day after Christmas.
“I’m one of those guys who likes to be prepared for the worst. I see how she’s walking. I see how she’s declining,” J.J. said. He fears this year may be Zoe’s last.
“I actually tell her how much I’m gonna miss her, even though she can’t say it back. I want her to know.”
He made Zoe’s funeral arrangements two months ago. “I didn’t want to leave the burden on family and friends,” he said.
J.J. turned his gaze across the room. Zoe clutched her mother’s hand and watched her face intently, arms swinging between them. “She loves holding hands,” he said.
“You are my sunshine, my only sunshine. I’ve sung that to Zoe her whole life,” said Kim. “But the last line…” she trails off. “Please don’t take my sunshine away.”