By William R. Toler email@example.com
June 20, 2014
ELLERBE — Jack Berry is a 12-year-old boy who, like most kids his age, admires superheroes.
His favorite Marvel Comics hero is Silver Surfer. He’s also a fan of DC Comics’ dynamic duo Batman and Robin.
But Jack has to deal with things most 12-year-olds don’t.
He began having seizures at 6 months old. He was later diagnosed with Dravet syndrome, a rare form of epilepsy, at age 6.
“For six years, we didn’t know what he had,” said his mother, Amy Berry.
“He’s been on every medication there is for his syndrome,” she said.
The family tried a special seizure-control diet when Jack was a toddler that Amy Berry said “worked beautifully.” She said he was able to come off all his seizure medications for two years.
But Berry said the diet didn’t work for long.
“One day, he woke up in a terrible seizure and from that moment on, we’ve had nothing but an uphill battle,” she said.
Jack also has a vagus nerve stimulator implanted near his heart that his mother said doesn’t work.
He is currently taking stiripentol, a drug that hasn’t been approved by the Food and Drug Administration, but has been given an orphan drug status. His parents are able obtain it through UNC Children’s Hospital in Chapel Hill.
The Berry family shells out $800 to $,1000 per month, depending on the market, for the medication that has to be shipped in from Europe.
“Right before he started the medication, we were in the ER with him all the time,” his mother said. “He was going to the ER in the middle of the night several times a year due to long-lasting seizures.”
She said Jack was having 25-30 grand mal seizures in his sleep each week before beginning the medication. Those have now dropped to eight to 10 per week.
“That has definitely helped,” she said. “But still there’s tons of room for improvement.”
The Berrys said that along with the seizures, Jack has mild autism and severe behavior problems due to the syndrome. Amy Berry added that some of the medications he takes add to the behavior issues.
“We can’t even travel with Jack due to his behavior,” said Amy Berry. “I can’t even go to the grocery store with him.”
Amy Berry said other parents with children who have Dravet syndrome have flocked to Colorado to obtain the Charlotte’s Web strain of hemp.
The modified strain was developed with a high concentration of cannibidiol and an extremely low amount of THC, the psychoactive component that causes the “high” experienced by recreational users of cannabis, according to the Realm of Caring website.
The oil extracted from the plant has been used to treat seizures.
Charlotte’s Web was named after Charlotte Figi, the first child with Dravet syndrome to be treated with the oil in 2012.
Since then, more than 180 epilepsy patients have begun treatment, according to site.
“It has helped these families so much,” she said. “(The kids) are even able to be weaned off of some of their seizure medicines.”
In a position statement on the use of cannabidiol, the Dravet Syndrome Foundation said, “As we continue to learn more about patients’ experiences with CBD — both successful and unsuccessful — DSF has become increasingly interested in promoting further research into the efficacy and safety of CBD treatment.”
“We used to just pray for something to take care of the seizures. Now the seizures have taken second seat to the fighting, the aggression he has,” said Lee Berry. “If we could just calm that down, the seizure reduction would be a bonus.”
Amy Berry said there is a lot of misconception in the community about the medication they’re wanting for Jack.
“A lot of people think Jack’s just going to be sitting around smoking a joint and that’s not the case,” she said.
“This is an oil that you would give him to ingest,” said Jack’s mother. “You just put in a dropper and give it to him and he swallows it.”
“I know there are opposers, but if they were to walk one minute in our shoes, they would know the struggles that he goes through and that we go through,” she said.
Amy Berry said her family has exhausted all efforts, all medications have been tried and there is no surgery for Jack’s condition.
“Nothing else can be done, so this is our last option to try,” she said.
A FAMILY STRUGGLE
The Berrys say most parents would’ve given up or had Jack institutionalized.
“It’s made us closer, but I can see where it would just split a family in a heartbeat,” said Lee Berry.” It’s been tough.”
Things haven’t just been hard for the parents. Lee and Amy Berry have two other children: Coleman, 14, and Ava, 8.
“It’s been a struggle for the other two kids to have to live in fear of when his next attack is going to be,” Amy Berry said.
The Berrys said they were also in favor of the legalization of medical cannabis for adults.
“There’s plenty of people that suffer,” Amy Berry said. “If it helps someone, absolutely.”
Lee Berry added that it could cut down on the addiction to prescription painkillers.
“If people need it, I really think they deserve a right to it,” he said. “It’s a lot better than some of these prescriptions that are eatin’ your liver up.”
He said they want to get Jack away from the regimen of pills he is prescribed. Jack currently takes 12 pills, twice a day.
“Half of them are killing him down the road,” Lee Berry said.
A bill that would allow the use of CBD oil passed the state House 111-2 on Thursday.
Rep. Pat McElraft, R-Carteret, introduced the bill in May. This week, it cleared the House health and finance committees within 24 hours before making it to the House floor.
Rep. Garland Pierce, D-Hoke, said support for the bill was bipartisan.
“It’s amazing how God gives man the wisdom to take a plant and make something good out of it,” he added.
The bill now sits in the Senate. If approved, it would then go to Gov. Pat McCrory’s desk for a signature or veto.
Sen. Gene McLaurin, D-Richmond, has met with the Berrys personally. McLaurin said he is “advocating and supporting it on the Senate side.”
The Berrys are hopeful this bill, their “last option,” will pass.
“We really think deep down in our hearts that it would be great for Jack,” said Lee Berry.
Reach reporter William R. Toler at 910-997-3111, ext. 16.