COLORADO SPRINGS, Colo. — Families of children with epilepsy are uprooting their families to Colorado Springs get a very useful ingredient that is considered illegal under federal law.
Seven-year-old Maddie from North Carolina, 19-year-old Jordan from Ohio and 4-year-old Holden from Utah: These kids and their families, along with more than a hundred others, have moved to Colorado in order to obtain a unique medicinal hemp oil extract.
The plant is called Charlotte’s Webb, named for Charlotte Figi, whose case started a medical hemp oil movement. Figi’s seizures were so severe, she was considered a terminal patient ready for hospice.
“It was this miraculous story, on her seizures. Her 300 seizures a week down to nothing,” said Paige Figi, Charlotte's mother. “It’s been the most significant thing that we’ve ever tried to treat her epilepsy.”
“Her quality of life is 100 percent improved,” said Matt Figi, Charlotte's father.
Why the oil works is still largely a mystery. The answer is locked inside the hybridized marijuana plant. It was developed by four brothers who formed “Realm of Caring” — a non-profit devoted to producing a plant specially bred to be very low in intoxicating THC and high in medicinal CBD.
The families know that getting off the waiting list at Realm of Caring is just one of many steps to getting help.
Multiple doctors must sign off on a medical red card, and families need to establish residency in Colorado to get the oil, since shipping it across state lines is illegal.
"We do need comprehensive legislation on the federal level so that people don't have to do what we're doing. Split up families just for medicine, it's ridiculous."
All those hurdles have turned parents like Paula Lyles into activists. She is fighting on behalf of her 19-year-old daughter Jordan.
“We do need comprehensive legislation on the federal level so that people don’t have to do what we’re doing,” Lyles said. “Split up families just for medicine, it’s ridiculous.”
For 4-year-old Holden Cromar and his family, leaving Utah was a difficult decision.
“It’s been very disruptive on my family. Really hard emotionally,” said David Cromar, Holden's father.
But it’s even harder for the family to just stand by and watch Holden’s seizures.
Holden has intractable epilepsy — his seizures are barely perceptible, yet they’re increasingly damaging to his body. He and his family hope to have the same results as Charlotte Figi.
“Holden has lost a lot of his early development,“ Cromar said. “All the knowledge he gained in pre-school—letters, colors, numbers—we’ve had to re-teach him the last four years of his life.”
Just like Holden, Maddie Gorman and her mother came to Colorado from North Carolina after other steps failed to calm her seizures. Maddie’s mother is convinced the oil is improving her daughter’s quality of life.
“This child, she’s had 14 different treatments for her epilepsy, including brain surgery that failed. And this is hands down the best treatment as far as seizure control and lack of side effects,” Liz Gorman said.
But the Cromar family knows the stakes are high now.
“We knew without a doubt we had to try,” Cromar said, “because Holden deserves at least the chance to not go through this.”