Sophia’s Story: One Family’s Fight For a Happily Ever After

Release Date
April 22, 2015

Topic

Healthcare
Description

Watch the extended video the Dr. Privitera to learn more about CBD and epilepsy.
Seven-year old Sophia is just like many other seven-year olds. She loves playing outside and singing along as she watches Disney movies. But Sophia has suffered from intractable epilepsy, a debilitating disorder that can cause her to have more than 100 seizures a day, since she was six  months old.
There is hope, though. Doctor’s believe Cannabidiol or CBD (a compound found in medical marijuana) may be an effective alternative treatment and cure. However, all forms of medical marijuana are illegal in Ohio, Sophia’s home state.
7 years old. 3 brain surgeries. 1 outlawed alternative. Sophia is extraordinary and she deserves her happily ever after. This is her story.

Drug Policy Alliance (Organization): the nation’s leading organization promoting drug policies that are grounded in science, compassion, health and human rights.
Students For Sensible Drug Policy (Organization): is the only international network of students dedicated to ending the war on drugs.
Learn Liberty Academy: War on Drugs Pt. 1 (Online Program):  This program explores why the War on Drugs has directly caused an alarming growth in the U.S. prison population since 1970.
Learn Liberty Academy: War on Drugs Pt. 2 (Online Program): This program attempts to analyze the history and net effects of drug prohibition.
The surprising story of medical marijuana and pediatric epilepsy (TedTalk): Josh Stanley will sift through the propaganda, fear and greed encompassing medical marijuana.
CNN Special Report (Video):  Dr. Sanjay Gupta shows the clear proven medical benefits of high CBD marijuana and why marijuana should not be classified as a Schedule 1 Controlled Substance.
CBS Evening News (Article & Video): Study: Marijuana extract may help children with epilepsy

Speaker 1: Twenty-three states and the District of Columbia now allow some form of medicinal marijuana.
Speaker 2: But figuring out if Ohio will join that list anytime soon, it’s easier said than done.
Speaker 3: Do you want to build a snowman? Come on, let’s go and play. I never see you anymore. Come out the door. It’s like you’ve gone away.
Speaker 4: My daughter, Sophia, she’s 6 right now. She is the most happy-go-lucky little girl I’ve ever met. She is always smiling.
Speaker 5: Who’s [inaudible 00:00:39]?
Speaker 3: Sophia. This box …
Speaker 5: Book.
Speaker 3: … book is just for you to help your …
Speaker 5: Body.
Speaker 3: … body to have loves …
Speaker 5: Less.
Speaker 3: … less …
Speaker 5: Seizures.
Speaker 3: … seizures.
Speaker 6: When you look at people with seizures with epilepsy, more than about 2/3 or so can be completely controlled with medication.
Speaker 7: She was diagnosed when she was 8 months old, so in 2008 …
Speaker 4: We took her to Children’s Hospital to the emergency room, and at that point, she actually had a seizure in the hospital, and it was very clear at that point. I think her mother and I recognized it immediately, and so did the doctor. I just lost it in the parking lot, just all of the weight of it hit me all at once, just like, oh, this is very serious. I didn’t know much about it at the time, but I knew it was bad.
Speaker 6: An about a million people in the United States have epilepsy that’s not completely controlled with medication. [00:02:00]
Speaker 8: The doctor came to us, the surgeon, right before the surgery happened, and just was reminding us that, “I have to tell you that this surgery is taking out part of where your daughter’s personality could lie,” parts of her personality. Something that was really hard as a parent was not to know if my very charming and awesome daughter that everyone falls in love with, if that was going to be the same person that came out of the surgery.
Speaker 6: Unfortunately, for Sophia, it didn’t work. They were able to get most of it out, but not all of it, and obviously that part that was left is still capable of generating seizures.
Speaker 8: She had seizures again after a little over a month, she had seizures again. We would like to try a plant that is natural.
Speaker 9: For a long time, the work on cannabis and epilepsy was inconclusive, maybe it works, maybe it doesn’t. They couldn’t quite figure it out. It’s only when they really started separating TMC from CBD, that they saw definitely, yes, CBD seems to really stop seizures.
Speaker 6: The belief is that it’s the cannabidiol portion of it that seems to have less intoxicating effects, and maybe more of these anti-seizure effects.
Speaker 4: We’ve tried everything else that they can possibly come up with. We tried to stop these seizures. None of it has worked. We should be able to try a pretty benign plant before you take out a quarter of my daughter’s brain.
Speaker 10: In a recent poll of nearly 2,000 doctors, 76% said they’re [00:04:00] in favor of using medical marijuana for a needy patient.
Speaker 11: I can’t tell you what that means to us.
Speaker 12: It gets you. Doesn’t it a little bit?
Speaker 11: If it doesn’t get you, something’s wrong with you. She lived her life in a catatonic state. Now, her parents get to meet her for the first time.
Speaker 8: I don’t even know Sophia without seizure medication. I’ve never gotten know her past 8 months old without being drugged on something, ever. She’s so amazing already on a lot of medicine, but it would be really awesome to know her without those medicines.
Speaker 6: It’s kind of absurd that your zip code determines when you can get a treatment or not get a treatment that you think might be effective.
Speaker 4: This is the last effort for us, and it should have been the first one. The first thing that we should have been able to do is try a plant.
Speaker 13: Do you see a scenario in which you would support medical marijuana?
Speaker 14: No. No. No. That’s a call for physicians, and no, that’s not what we need to do.
Speaker 3: … the bare necessities. Forget about your worries and your strife. I mean the bare necessities. That’s why a bear can rest at ease with just the bare necessities of life. I come prepared. [inaudible 00:05:58] [00:06:00]