Only something terrible could split up the Fosters, a tight, home-schooling family of 11 from a farm near Gettysburg.

It took disabling seizures afflicting 15-year-old Lydia Foster, and the fact that the most promising treatment, derived from marijuana, is illegal in Pennsylvania.

So Debbie Foster took Lydia and four other daughters to Colorado, where they squeezed into a one-bedroom basement apartment. She established Colorado residency and took Lydia for two legally required exams by Colorado doctors. She applied for a “red card” and went on a waiting list. They joined a church.

After a month, Foster was able to go to a dispensary to obtain a medicine derived from Charlotte’s Web, a specially cultivated strain of marijuana.

She says Lydia seemed to benefit from the droplets of oil, which cost $850 per month and wasn’t covered by insurance. It cut the frequency of her seizures in half. Her nighttime grand-mal seizures disappeared and she slept better. She focused better during the day.

But after four months, the family stress and financial toll became too much. Debbie Foster, whose husband is a special education teacher, was putting living expenses on credit cards. Their cramped apartment lacked sleeping space for visiting family. Foster worried about her son, who had just begun college near their home in Adams County.

“You could lose one because you are trying to save the other,” Foster said.

Such are the the heart-wrenching choices faced by Pennsylvania families of children with severe seizures who believe medical marijuana represents the best treatment option.

Twenty states and the District of Columbia have legalized medical marijuana. Pennsylvania isn't among them, although a recent poll found that 85 percent of residents favor legalizing medical marijuana, and there's a bipartisan bill in the state legislature that would allow it.

But the opponents include Gov. Tom Corbett, a former prosecutor, who has said he won’t sign a bill legalizing medical marijuana, and that change must first occur at the federal level.

Supporters of medical marijuana suspect Corbett, running for re-election, has put out word he doesn’t want to have to veto a bill.

“Right now, I’m not seeing a democracy, I’m seeing a dictatorship,” said Latricia Bentch of Swatara Township, a parent of a child with severe seizures and an organizer in the medical marijuana push.

Some Pennsylvania families have responded by moving to Colorado, sometimes splitting a family in two. Some, according to people who know them, have brought Charlotte’s Web back to Pennsylvania, which is illegal. One who spoke at a public rally said she gives her child, who is older, marijuana bought on the street, and said her state legislator advised her to do so.

One Harrisburg-area parent, who doesn’t want her name published, took her child to Colorado and got on the waiting list, now months-long. In the meantime, she is giving her child a marijuana-derived medicine obtained elsewhere. She informed her child’s doctors. One health care provider cited a mandatory reporter obligation to inform child protection authorities. Now the parent fears begin accused of child abuse.

Still others, unable to uproot, are burdened by guilt that they’re failing their child.

“Every time our child has a seizure I say why am I still here? We have to help him,” said Christine Brann of Derry Township.

Brann is wrestling with whether to uproot.

She is a lawyer and her husband is a financial planner. Their son, Garrett, 3, has Dravet syndrome, a rare and severe seizure disorder. His seizures are so frequent they have thwarted his intellectual growth, Brann said.

They have tried 10 different drugs, often in combination, and none have adequately controlled his seizures. He’s now on three drugs, which make him glassy-eyed and which come with risk of side effects including liver damage, Brann said. Doctors agree that medicines used to treat such seizures can have minimal benefit while causing severe side effects.

Brann's mother is a lawyer and her father is a retired emergency room doctor. Last year, CNN aired a special called "Weed" which highlighted Charlotte's Web and its positive impact on a Colorado child. Moreover, CNN's Dr. Sanjay Gupta has stated his belief that the federal decision to make marijuana a Schedule 1 drug — meaning it has high potential for harm with low medical benefit — was based on politics, not science. He has come to believe marijuana holds great medicinal potential.



Charlotte’s Web is high in CBD, which is believed to help people with seizures, and low in THC, the marijuana ingredient that causes the high.

After watching "Weed," Brann and her husband began connecting on the Internet with other parents of children with severe seizures, and became convinced Charlotte’s Web offers the best hope.

She said Garrett’s neurologist agreed.

So Brann and her mother flew to Colorado with Garrett. She obtained legal residency, which can by accomplished through steps such as signing a lease or obtaining a driver’s license.

She brought medical records and a recommendation letter from Garrett’s neurologist, and had Garrett examined by two Colorado doctors.

Traveling with a child in Garrett’s condition wasn’t simple. He’s on a ketogenic diet, which his parents believe helps his condition. His meals require weighing of each ingredient and painstaking preparation, and he must eat according to a strict schedule. It’s hard to feed Garrett with no access to a kitchen, and a Colorado trip would have been impossible without another adult, Brann said.

After four days, they had received the “red card” needed to obtain Charlotte’s Web and placed Garrett on the waiting list. Brann said she was told there are 2,000 people waiting for Charlotte’s Web and it might take until October until her name comes up.

Still, Brann and her husband wonder if it’s doable. They worry about the impact on their careers. Brann isn’t licensed to practice law in Colorado, and if she moved there alone with Garrett, she would have to care for him, and wouldn’t be able to work anyway. They might not be able to afford two residences. Beyond that, they have a 7-year-old daughter, and being separated from her would be “torture,” Brann said.

Brann is unsure what they’ll do when the call comes. But she knows that, if she remains in Pennsylvania, she’ll feel terrible guilt every time Garrett has a seizure. “It’s almost unfathomable that in the United States parents are faced with type of decision,” she said.

Debbie Foster said that, while in Colorado, she was struck by how many women had come there with a child and were obviously struggling without their support system.

In her case, Foster said, she had advantages which enabled her to make a move she wouldn’t otherwise have considered. She had friends who had moved to Colorado and belonged to a church Foster planned to join. Someone within the congregation had a basement apartment. Foster said she wouldn’t have gone without the assurance of safe housing.

But even the means to move isn’t a guarantee.

While in Colorado, Foster concluded Charlotte’s Web, while it made a difference, wasn’t the “magic bullet” for Lydia. But that’s to be expected, she said, given that no medicine has the identical effect or benefit for every user. She also believes Lydia might have benefited more over time.

She remains convinced CBD offers a promising treatment for Lydia. She has been obtaining a CBD-based medicine, which she said is legal, by mail-order. It’s helping, but it costs $1,100 per month. Foster would like to try to higher dose, but they can’t afford it.

Outside their home on a recent afternoon, chickens pecked the ground at the edge of their yard, and their dairy cow grazed in the distance. They farm as a hobby to provide meat, milk and eggs, and rent fields to a farmer.

Lydia Foster wore jeans and a fashionable floppy hat. But the hat wasn’t entirely a fashion article: On the inside, her mother had attached a thick pad to cushion Lydia’s head during a seizure. Lydia used to wear a helmet.

On that very afternoon, Lydia’s face went blank, her body went rigid and her legs buckled. Her mother, standing nearby, reflexively gained control of Lydia’s upper body before her head could hit the ground. She made sure Lydia’s eyes, which remained open, were shielded from the sun. A sister bee-lined over and straightened Lydia’s legs, which had folded awkwardly.

The seizure was over within a minute. Lydia rose and, looking into the distance with a mildly annoyed expression, spit out an accumulation of saliva. Then she headed for the house as if nothing had happened.

This happens four to eight times a day, he mother says. They have tried seven or eight different drugs, including some that put Lydia to sleep for most of the day. She was evaluated for a surgery that would have removed part of her brain.

Debbie Foster, 54, said she has never smoked marijuana and, while in high school, walked a long, circuitous route around a spot where pot smokers congregated.

Now she is convinced marijuana has undeniable medical benefits for people with seizures, and for people with other conditions who need additional options.

“Who wouldn’t want to try it? Why shouldn’t they be allowed to try it?” she said.