Losing my job, or losing my kid, what would any mother do . Reporter tonight, the promise this is what you give up when you start using cannabis. Reporter the risks. We dont know the potential sideeffects. We dont want to make their seizures better and make their lives worse. Reporter and the families caught in the middle. Its awesome. I dont feel like a monster anymore. One kid, one day of no suffering is absolutely worth it. Reporter growing hope. Good evening, and welcome to dateline, im lester holt. Should medical marijuana be legal . Does it work . For which diseases . For doctors, its about the science. For lawmakers, its about politics. But for the families youll meet, its so much simpler. Its about their children. Heres harry smith. Reporter three mothers and their children. On this winter day in virginia, they have a big hill to climb. Each child is desperately ill. Each has a form of epilepsy. No one else that i knew had a kid with seizures this bad, and no one knew how to treat it. Reporter illnesses so insidious they have stymied an army of doctors and specialists. A year of huge emotional stress on our family. Reporter but these women believe there is something that might help. Something illegal in virginia, an oil extracted from marijuana. What is your hope for medical marijuana . To meet our daughter. To meet who she really is. Reporter to make that happen, these families are attempting to do something theyve been told is impossible. They must change a law that has stood for decades. Reporter tonight, well follow them on a remarkable journey not only through the halls of government, but to the rocky mountains, where people with all sorts of illnesses are seeking help. For these people, marijuana isnt about getting high, its about getting well. Give kisses. Okay, thats enough. Reporter lisa and bobby smith were elated when their daughter haley arrived on august 20th, 2000. She was the Perfect Little baby or so they thought. Are you playing the piano, haily . Can you play some more . Her first seizure was when she was five months old. Five months . Yeah. Right, up until that point . Normal, happy, developmentally right on track. Abc. But she was also my first child, so i could have had blinders on and didnt see some of the signs that were there. Reporter haleys seizures became more frequent. More violent. She wasnt diagnosed till she was 7, so that was a true roller coaster. Yay, 7 years old. It was awful the first seven years because we we didnt know what was wrong with her. Reporter over the years, haleys mystery only deepened she was eventually diagnosed with dravet syndrome, a rare form of epilepsy that can be fatal. Do you live your life on a kind of razors edge . Anywhere you went with her you would just hold her and think, okay, she has a seizure right here, what am i going to do . Reporter treating dravet syndrome is a challenge. Quite often, epilepsy drugs dont work. Sometimes they do more harm than good. She was actually in the emergency room every week. And thats not exaggerating. Every week from january to april in 2005. Reporter by 2012, haley was a teenager and the seizures had only gotten worse. Haley was having about 300 seizures a year. And to us, that was okay. You know, 300 seizures a year was it was okay. Yeah, we can handle that. You know nobody can comprehend that. I know. Right . People that are watching this. You said it was a pretty good year cause she only had 300 that year. Yeah. Reporter all those seizures took a toll on lisa, now also raising and home schooling twin boys and bobby trying to make a living as a contractor, and support his family. What else starts with h . Hat. Reporter about three years ago, desperate for anything that might be able to help her daughter, lisa stumbled upon a most unconventional treatment. She found a mom in colorado who said that marijuana worked wonders. We were on dozens of drugs and each one worst than the next. Reporter paige figi is that mother. She lived in colorado springs. And her daughter charlotte was diagnosed with dravet as a toddler. She was on seven daily seizure drugs at two years old and had failed every drug at two years old as well. Reporter charlotte was so sick, she was in hospice care. Paiges husband, matt, was a green beret. Deployed to afghanistan for much of this time. Reporter paige felt very alone. I hit rock bottom with her. The hospital said theres nothing left. We dont have anything left to do. Were sorry, you should just go home and deal with this at home. So when they tell you, just go home and deal with this at home, are they basically saying, go home and watch your child die . I literally i brought her home and i put her on a do not resuscitate. My husband had to sign it from afghanistan. And i was just going to say goodbye. And every night its actually, and ill say this. I was praying for her to die, because it was so bad to watch the suffering that shes going through. You just wish, and she didnt. So its hard for me to admit that, but she didnt. Its very difficult to see a kid suffering that greatly, that you actually do, you just wish for it to stop. And in her case the only way for it to stop was for her to just pass away in her sleep. Reporter but, paige didnt give up. She kept looking. She and matt both discovered online reports of epileptic children whose seizures abated or even disappeared when they were given marijuana. They wondered if it could work for charlotte. We were in a legal state. I got her a red card. I got two doctors. For medical marijuana . For medical marijuana. I just started looking into it. Her epileptologist gave me the go ahead. Reporter paige was particularly interested in an overseas study that suggested oils made from a cannabis plant high in a compound called canabadiol. A nonpyschoactive element in marijuana, seemed to be effective in reducing seizures. A friend put paige in touch with a grower. Together they made the oil for charlotte. Shes catatonic in a wheelchair on oxygen on a feeding tube and i put it in her feeding tube. In a measured amount, very low dose to start. And just waited to see if it would work. And she stopped seizing. So she didnt have a seizure for seven days. She didnt have 300 seizures that week. Nothing had done ever this. Time out. Shes having 300 seizures a week. You think shes going to die, right . And you introduce this for the very first time. And it just stops. Yep, her seizures stopped. And she didnt have a side effect. Reporter that was then. Where you going . Up the trail . Reporter this is now. That squeal of joy is from the now 8yearold charlotte, who kharly, as her family calls her, speeding through the pine trees of colorado on the zip line her mother matt built. Pretty good zipliner. Reporter reading paige and charlottes story online gave lisa smith back in virginia new hope, but also cause for concern. The use of marijuana, even as a medicine made her family uncomfortable, yet the benefits seemed to outweigh the stigma. Pot though, wasnt and still isnt legal in virginia. So the big question for the smiths was, should they uproot their family and move to colorado . Moving was not an option . I would say it was always an option, but it was way off. So what did you do . Fighting. We chose to fight. Reporter fighting meant lisa smith would have to get the virginia General Assembly to completely change the way they thought about marijuana and convince them to change a state law and she knew she couldnt do it alone. So at the age of 14, she has nothing left. If she was your child, what would you do . Reporter coming up call them a band of mothers, fighting fear of the unknown, can they change minds and the law . Can anybody say, well, thats crazy, because its never going to happen . Oh, yeah. Owl the outsiders, you say, marijuana and theyre like, w [ gasps ] cups your teeth to break up plaque, and rotates to sweep it away. And oralb delivers a clinically proven superior clean vs. Sonicare diamond clean. My mouth feels super clean. Oralb. Know youre getting a superior clean. Im never going back to a manual brush. Discover new magnum double Peanut Butter. Made with a perfect balance of Peanut Butter ice cream, Peanut Buttery sauce, and belgian chocolate. Discover magnum chocolate pleasure. I know blowdrying fries but im never gonna stop because now, ive got pantene shampoo and conditioner. Pantenes got the prov formula to make my hair so strong the damage of 100 blowdries is gone. Strong is beautiful. ™ pantene. 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Well hes definitely going to lose a stroke on this hole. If youre a golf commentator, you whisper. Its what you do. If you want to save fifteen percent or more on car insurance, you switch to geico. Its what you do. This golf course is electric. Lisa and bobby smith have cared for their daughter haley, who suffers from a confounding form of epilepsy. Over time, they met other families struggling to cope with these extreme forms of epilepsy. In 2014, some of these families finally met in person at a seminar to learn how to lobby their state government. Together, they decided to do something audacious. Convince the state legislature to make legal room for a very specific medical marijuana. If it was just a matter of getting the oil for the children, healthwise, everybodys on board for that. Were from fairfax, virginia. Reporter this was the core group beth and patrick collins, and their daughter jennifer, who suffers from jeavons syndrome, another extreme form of epilepsy. And jennifer has a statement. Shes a litte nervous so im going to read it for her. We came down to the capital today to lobby for medical marijuana. Reporter rounding out the group is teresa elder her daughter ashley and her son tommy, now 22, he wasnt supposed to make it to his third birthday. Reporter the hope for all of these families was that an oil, extracted from a marijuana plant, might help where all other medications had failed. So you as a group get together and say, weve got to get the law changed in virginia. Right. Did anybody say, well, thats crazy because its never going to happen . Oh, yeah, all the outsiders did, no way. It will never happen. And why . Because its the m word. You can be in there talkin to someone, legislator, delegate, senator and they say, oh, hi, you know, whats your name. Blah, blah, and then youre talking, and then you say marijuana, and theyre like, you can see the reaction change. Reporter changing the law in virginia is critical for teresa and her son tommy because as soon as tommy doesnt become a resident of virginia he loses all the services i fought for twentytwo years to get. Services tommy cant live without. Like, he has home nursing. Now that hes an adult, he qualifies for medicaid. When your bills are between 500 and 600,000 a year, thats a lot. So the virginia families fight begins. On this day, they crowd into this hearing room. Nervous, but determined to begin the long process of changing the minds and hearts of these lawmakers. The families are not asking for legalize marijuana in the state but they are asking for permission to use cannibisbased oils that have shown promise in treating epilepsy. Reporter republican speaker of the house, james howell, listened to the parents in a meeting but was far from optimistic. Please dont hold out any great hopes, its a tough thing but i dont want to set up any false aspirations. Reporter a new law would have to pass both chambers of the virginia legislature. This is the first step, a committee hearing. Mr. Chairman. Reporter the proceedings begin with state senator dave marsden explaining the bill hes introducing. Virginians should not have to become medical refugees from their homes and live in other states. If you could introduce yourself reporter then, its the families turn. My name is beth collins and this is our youngest daughter, jennifer, she was going to testify but shes not feeling well today. We had exhausted all other treatments. The side effects of her medication included rages, cognitive functioning issues excuse me. This was not the happy go lucky child i once knew. Reporter before beth collins can finish testifying, it happens. Right there in the hearing room, haley has a seizure. Lisa struggles to stabilize her daughter and tries to regain her composure. She still wants to speak to the lawmakers. This is leeza lisa smith. Reporter she collects her thoughts and she steps to the microphone. This is normal for me this is daily for me. Its been stated we dont know the longer term effects of medical marijuana but i can tell you i know the long term effect of uncontrolled seizures. Itll be cognitive decline and premature death. I look to see if my daughters lips are blue. I watch her when she sleeps, i look for the rise and fall of her chest. At 14. Thats not what we do. So i ask you, i beseech you, please let this come out of committee. Reporter finally its teresa elders turn to speak. She doesnt say much, but what she says comes straight from the heart. Reporter so let me leave you with this, if i come back here next january its very probable ill come by myself and youll recognize me and if i have an empty stroller, this very testimony will come flooding back to you. Please help us help our children. Reporter just seven days later, tommy would be rushed to the icu and put on life support. For teresa and the other families, the stakes couldnt be higher. Coming up, help from a higher power . I started to realize theres absolutely nothing thats unchristian about helping people with a plant. Reporter meet the remarkable Stanley Brothers. When dateline continues. Good job. Reporter seven short days after teresa elder told the virginia lawmakers her son was running out of time, tommy elder was overcome by a powerful seizure. Bounce it to me. Reporter his sister ashley says its never easy for her brother. Im gonna get it. Sometimes hell come up to you and just give you this look like, hey, im about to have a seizure, and like grab onto you, and then sometimes hell kinda yell out as hes going into it, and you just hear this big, you know, grunt, or a yell while hes going into his convulsions. And its pretty scary. Reporter this seizure lasted almost an hour. It was so severe that tommy was rushed to the icu. He went into respirtory failure. His lung collapsed and the seizures continued. His mother captured one on camera. Reporter teresa sat by tommys bedside day and night as doctors worked to stabilize him. This was the 39th time in his life that tommy needed life support. Teresa and the other virginia families were now more focused than ever. But as the legislation they believed would help their children, made its way through the virginia General Assembly, lawmakers continued to ask whether there was proof the oils even worked. The old hypocratic oath first said, nono harm. We seem to have abandoned that and replaced it with, first do something. Reporter to try to find the answer, we went to colorado. Medicinal and recreational pot are legal here and because of that the state has become something of a new lourdes. With people flocking here for cannabisbased cures. The main characters of this beautifully written novel are the stanleys. I would like them to step forward. Reporter and in the middle of it all are the Stanley Brothers. All six of them. Reporter the Brothers Story begins small and in a personal way, theyd begun to legally grow Medicinal Marijuana and gave some to a cousin dying from cancer. It really prolonged his life and gave him a better quality of life. I mean the doctors pretty much told him, go home. Get ready to die . Yeah. Reporter but it was another patient who transformed the brothers mission. For, it was joel stanley who brought paige figi the marijuana that was just right for her epileptic daughter, charlotte. We had what she was looking for. A nonpsychoactive type of plant and i went to her house and i started talking to her and charlotte had two seizures right there within the first hour of us sitting down talking. So this became very real but it became a very difficult question. Will you make something for my child whos already very sick . Reporter Charlotte Figgi was the first person to get the oil the brothers made, paige says it stopped her daughters seizures. Yeah. Reporter now, having hired botanists and scientists and built a lab, on a large scale, they are making the very oils the virginia families want to give their children. They even named the cannibis oil after their first user. Its called charlottes web. Charlie, ya ready . Reporter the oil was so effective, the figis eventually took charlotte off of all her meds and to this day charlottes web is all she takes. And we do that in the morning and the night and thats all kharly needs. You have to indulge me on this. Did anybody think, this is a miracle . I still think it is and then another one happens every day. So youre from this big family. Evangelical christians, right . Was there a part of whatever moral tuning fork is inside you to say, this is a nonstarter . Dont a lot of evangelical families produce rebels and [ laughter ] you know, i was all about it. Once i started to look into it, i started to realize theres absolutely nothing thats unchristian about helping people with a plant. Reporter the brothers say the oil is now helping hundreds of other children with epilepsy and the cost . 250 a bottle. It lasts two months. I wanna plant this flower. Reporter a number of the families who come to colorado seeking help, wind up at the realm of caring. A support group the stanleys helped establish. Reporter Heather Jackson runs realm of caring. Zaki is her son. She says hes been seizure free for the two years hes been on charlottes web. People hear these stories, they see these children, they still find it hard to believe. I know. I mean, i would find it hard to believe if i wasnt living it. Hopefully, what well be able to do with the realm of Caring Foundation is to establish the research and collect in a way that the Science Community can say that its valid because youre right. Right now his story is just anecdotal evidence. Its just a good sto