In 1998 Oregon voters approved a ballot measure to legalize medical marijuana. Today nearly half the states have passed similar laws. Another fifteen allow the limited use of cannabis to treat conditions like epilepsy.
Oregon is the only place in the nation that lets out-of-state residents get a medical marijuana card here. For one Texas family, it gave them a chance to try a new cannabis treatment for their baby. She suffers from a rare brain disorder and seizures.
KLCC's Angela Kellner has part one of Ellanor's story and her parents journey to help improve her quality of life.
19-month old Ellanor Blanchett sits on her mom's lap, gulping down her bottle of milk. Her wispy blonde hair hides a giant scar from brain surgery.
Her 30-year-old mom, Sabrina, says life changed when she noticed her newborn twitching and recorded it on video.
Sabrina: "When we went to the pediatrician, showed them the video, they said, 'Oh that's not twitching. It is definitely seizure activity.'"
Ellanor was sent to the emergency room where a litany of tests was performed.
Sabrina: "The ER doctor came in and said that they had seen on the scan that her corpus callosum was not there, that it didn't develop."
The corpus callosum connects the two hemispheres of the brain. An MRI showed Ellanor had several other brain abnormalities. She also had lacunae spots on her eyes.
Sabrina: "Those are the three things: the seizures, the corpus callosum and then the spots on the eyes to diagnose Aicardi Syndrome. And so with that, November 14th, 2013, that's when she was diagnosed."
A devastating diagnosis - Aicardi Syndrome - an extremely rare neurologic disorder. It occurs almost exclusively in girls. There is no cure. The lifespan of Aicardi girls ranges from dying soon after birth to living into their 40s.
Sabrina: "All of the little girls start out with infantile spasms and then as they grow older, they start to develop other forms and types of seizures that become more severe and more dangerous."
Ellanor started taking an anti-seizure drug. Then she began having infantile spasms. They came in clusters and could last up to forty minutes. They tried more drugs, all with bad side effects. Her neurologist suggested surgery.
Sabrina: "We were willing to try just about anything to give her a better quality of life. Lots of praying to make sure that was the best choice for her, as her parents, making the best choice for her and we had peace and comfort moving forward with that."
Sabrina's husband Chris is a pastor at First Baptist Church in Ponder, Texas. Putting their faith in God and the surgeon, Ellanor underwent brain surgery when she was four months old.
Sabrina: "They removed her frontal lobe on the right side, a quarter of the parietal lobe and three-fourths of the temporal lobe."
Surgery helped decrease her seizures to between five and ten a day, each lasting ten to twenty minutes. She was put on more medication. But Ellanor was still having seizures. Another surgery was offered.
Sabrina: "We weren't ready to say, yeah, twice in one year let me sign off on a piece of paper for you to cut my kid's head open. Like, we're just not okay with that."
Chris and Sabrina also weren't satisfied with the potential outcome of the surgery.
Sabrina: "She wouldn't be having seizures on the right side of her brain anymore because it wouldn't be there. But she would probably start having them on the left side."
Sabrina searched for alternatives. She's part of online groups for Aicardi Syndrome and people with seizures.
Sabrina: "Vitamins, fish oil, DHA to help improve brain development and things like that. And then the whole rush of the marijuana thing."
Sabrina had heard of using marijuana to treat seizures. She was familiar with the case of Charlotte Figi in Colorado who has Dravet Syndrome, a severe form of epilepsy. Charlotte was having 300 seizures a week. When medications failed to help, charlotte’s parents turned to medical marijuana. Their story was part of the CNN special called “Weed” with Dr. Sanjay Gupta.
Dr. Gupta from CNN: "At home in Colorado, Paige searched for marijuana high in CBD - that's the ingredient some scientists think help seizures - and also low in THC. Remember, she didn't want to get her daughter stoned."
The CBD extract reduced Charlotte’s seizures to one or two a week.
Using her social media network, Sabrina Blanchett found a girl who was the same age as her daughter and had the same brain disorder. The mom had been posting about their success with a new medical marijuana treatment in Eugene.
"We were willing to try just about anything to give her a better quality of life."
Sabrina: "I kept going back to her, and how did y'all do this and what is different from you then all these other people because something is different about what you're doing. And so that's when she told me about MX Biotech here in Oregon."
Sabrina contacted the cannabis researcher in Oregon. She did her homework, convinced her husband, raised money online and made travel plans. Ellanor's Texas doctors were on board with her trying medicinal cannabis.
Sabrina: "Our neurologist was very supportive of us trying it, but not supportive in that it was going to work based off of that there's not enough research."
In January of 2015, Sabrina, Chris, their 4-year-old daughter Joslin and 15-month old Ellanor flew from Texas to Oregon. It would raise tough questions, open their minds and strengthen their reserve to improve Ellanor's quality of life.
Tomorrow we’ll find out what happens when Ellanor tries the medical cannabis developed in Eugene. We’ll also hear from a pediatric neurologist in Oregon who is frustrated by federal restrictions on marijuana research.
