CLEVELAND — In the foothills of Colorado Springs, CO there is a garden of sorts growing a plant most of us consider illegal: marijuana. But this special strain of the plant is called “Charlotte’s Web” and won’t get you high because it doesn’t contain high levels of THC, the compound that produces the euphoria associated with pot. Instead, it’s engineered with high levels of CBD, or Cannibidol. Purified into an oil, it seems to be a life-changing treatment for children with a devastating form of epilepsy.
In 2010, WKYC brought you the story of the Kiblers and their issue with fertility struggles. After years of heartbreak, Khristian and Jill took an unusual step to parenthood. To improve their odds, Jill had three embryos implanted in her. Jill’s sister carried the other. As luck would have it, all four took.
Jill first gave birth to Piper, Collin and Gunner. The fourth, Lola, came a month later than her siblings. Everything progressed as normally as it could for exhausted parents of four newborns, until they noticed tremors in Lola. At five months, she suffered her first major seizure.
“She’s under constant threat of what’s called SUDEP, Sudden Unexpected Epileptic Death,” Khristian says.
Doctors diagnosed Lola with a rare genetic condition called Dravet Syndrome. Each day her little body is wracked with dozens of seizures.
“Where she locks up her body, her eyes go up in her head and she has bubbles or froth coming out of her mouth,” Khristian says.
Each seizure causes more damage to Lola’s brain and there is no surgery that can help.
“She just started walking but she’s wobbly like a toddler and she’s in speech therapy, physical therapy,” Jill says.
A cocktail of powerful drugs helps control the seizures but eventually they may no longer work.
“The one drug she takes is horrible for her liver so she has to take another drug to counteract that and I feel the pharmaceuticals she takes keep her behind,” Jill says.
“If she doesn’t stop seizing with these drugs than we’re lost, and we’ll lose Lola,” Khristian adds.
Christina Frate understands the Kibler’s fear too well because Dravet Syndrome causes her daughter Paige to average 50 seizures a day.
“We don’t take any day for granted because at any point we could lose her,” Christina says. “We just don’t know if there’s a tomorrow for our kids.”
That’s why families – some of them from Ohio, are leaving family and jobs behind to move to Colorado – where marijuana is legal, and Charlotte’s web is available. The oil is named for Charlotte Figgi, another Dravet’s child, and it seems to have amazing results.
“We are two years into this, she’s off all her pharmaceuticals. doesn’t use her feeding tube, doesn’t use her wheelchair,” says Paige Figgi, Charlotte’s mother.
Rainbow epilepsy expert, Dr. Nancy Bass understands why her patients are desperate.
“If medical marijuana was legal I would prescribe it if I could be sure that I was giving my patient a proven highly purified form of the CBD,” says Dr. Bass.
Dr. Bass and the families want to see medical marijuana legalized in Ohio.
“We want to get this medication available for kids but we also have to make sure it’s safe,” Dr. Bass says.
And while Charlotte’s Web seems like a miracle treatment, Charlotte Figgi still suffers from some seizures. Heartbreaking proof that it is not a cure, but an option of hope dozens of parents are desperate to try.
Christina doesn’t remember the last time she had a solid night sleep.
She’s on constant alert, and frustrated that 24 states including Washington DC have legalized marijuana that could help her child.
“I just don’t understand why as a parent and an Ohioan that I should have to leave the state to get the medical treatment that my daughter so deserves,”
Dr. Bass says clinical trials on CBD oil are being planned but there are still scientific studies to be done and, if all goes well, FDA approval. But that could take years. Years that families, like those of Lola and Paige, do not have.
That’s why so many are heading to Colorado for hope.
Follow WKYC’s Senior Health Correspondent Monica Robins on Twitter: @MonicaRobins
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