Marijuana isn't what most families discuss at the park - but for the Gilmore family, it's personal.

John Gilmore's daughter Lili, 13, was diagnosed with Lennox-Gastaut syndrome, a severe form of epilepsy, when she was 3 years old.

The family has tried more than 25 different medications, as well as special diets, to control her seizures, he said.

And now, Lili has completed five of 16 months of a trial for Charlotte's Web, a strain of medical marijuana.

The Hanover-area family is one of several that have worked with Congressman Scott Perry, R-York County, to legalize this form of treatment. Perry on Monday officially introduced the Charlotte's Web Medical Hemp Act at John Rudy Park in East Manchester Township.

Lili's trial: During her trial, Lili has seen reductions in all the types of seizures she has, Gilmore said, adding she's had 17 seizure-free days in that timeframe.

She's not a candidate for surgery, and some FDA-approved medications have caused hypertension, weight loss and gain, appetite changes and other side effects, he said.

So far, Gilmore said the only side effect during the trial is that she's tired.

Only a few dozen other patients are part of the trial, so the family sometimes feels guilty that other families can't participate, he said. Perry's act would remove cannabidiol oil and therapeutic hemp from the federal definition of marijuana in the federal Controlled Substances Act, making it legal for families across the country to access this type of treatment.

Charlotte's Web: The act gets its name from a non-psychoactive strain of marijuana cultivated by Joel Stanley and his brothers in Colorado. The marijuana extract is high in cannabidiol content, is not smoked and does not produce the "high" associated with recreational use.

Initially named "Hippie's Disappointment," the strain was renamed "Charlotte's Web" after it helped a girl in Colorado named Charlotte Figi. After treatment, she went from having as many as 300 grand mal seizures per week to four per month, said her mother, Paige Figi.

Before the treatment, her daughter couldn't walk, talk or breathe on her own, she said. Two and a half years later, she's running, dancing and riding horses, Figi said.

Charlotte couldn't make it to the press conference because her treatment isn't legal here, she said.

Stigma: The legislation in no way federally legalizes the recreational use of marijuana, nor does it legalize all forms of marijuana for medical use, according to Perry.

He said he personally opposes legalizing recreational use of marijuana but that there is still a stigma attached to legislation like the Charlotte's Web Medical Hemp Act.

"We've got to get past the stigma of what this isn't," Perry said.

Some families move or even break up to seek this potentially life-saving treatment out of state, Perry said.

"This is America. No family should have to break up ... to get care," he said.

Families need to have this legal option now, not five or 10 years down the road, said Phil Gattone, president of the Epilepsy Foundation of America.

"We need access to treatments that are showing promise," he said.

Perry said he will work to gain co-sponsorship in the upcoming week and that he hopes the bill moves out of the House's health subcommittee by the end of the year.

"This is about getting the federal government out of the way," he said.

- Reach Mollie Durkin at mdurkin@yorkdispatch.com.