Jessica Reid struggles to maintain focus as we chat about her two-year-old son Emmanuel’s diagnosis of malignant migrating focal pre in infancy. “I’m so sorry; he’s trying to go to sleep and he’s having a seizure now,” she says and then disappears from the zoom window. A moment later, she’s back; out of breath but more than ready to tell her family’s story.
It’s a sadly familiar one to parents facing the incomprehensible tangle of specialist’s visits, state regulations, national guidelines and millions of pages of potentially life-changing – or entirely false – information that marks the life of a child with a rare disorder. Only a couple hundred people worldwide are known to share Emmanuel’s disability, an uncommon gene mutation that affects his brain’s potassium channel and is so far resistant to medication and typical therapies. Doctors tried dozens of them, put Emmanuel on a strict keto diet, and when all else failed, began dosing the infant with Ativan, which largely stopped the seizures, but meant Emmanuel slept nearly all the time.
“Quality of life is not sleeping all the time,” Jessica insists. “Quality of life is living, seeing, at least trying to do things. And I could not stand that he was always knocked out by the prescription meds.”
After months of trial and error, Emmanuel was averaging 200 seizures a day and Jessica was on the warpath. A lactation counselor by trade, she leveraged her background in human sciences and an innate curiosity to dive headfirst into research for a way to reduce her son’s suffering. That’s when she learned about CBD, CBG, THC and the endocannabinoid system.
“I went to his doctor and asked if we could try this, and he said sure, but in Georgia where I live, even with doctor’s consent, they can’t tell you what medication to use, and you’re not protected when you use it.” Before long, after meticulous dosage tinkering and trial and error, Jessica discovered that an eight-to-one ratio of a select few full-spectrum CBD products with THC reduced Emmanuel’s seizures to 60 a day, then to 10 a day, and eventually to zero on many days. Unfortunately, the state of Georgia was not as excited about the discovery.
“I did what I was supposed to, paid the $25 for the Georgia medical use card, and DFACS (child protective services) was at my house, demanding they see Emmanuel because we were giving him an illegal substance.”
The harassment, coupled with the fact that few daycares in Atlanta would take Emmanuel because of his need for high level care, has forced Jessica to become a medical refugee. She bounced first to Texas to stay with family, but is heading for California to join the cannabis advocacy community there and hopefully get the ear of Dr. Bonni Goldstein, renowned physician, author and founder of Cannabis is Medicine. “I just have to become a California resident so that he can be seen by her, and because he can’t get what he needs in the state of Georgia right now.”
Today however has been a decent day. The seizure that troubled Emmanuel at the beginning of our call has subsided, and both mom and son will gather their strength to fight another day. “I just won’t accept what they say; that he’s not gonna make it to his fifth birthday,” she tells me in parting. “I’m a fighter. I have faith that he will meet all of his milestones, that he will graduate kindergarten, that he'll graduate elementary school, middle school, high school, and go on with his life…because I’ve seen so many people recover with the help of cannabis oil.”
“Every day is a blessing. It's just how you look at it. I'm not going to give up on him. I'm not letting this take over his life, because I see other kids live with epilepsy. They might have seizures. They might have worse days.”
“But they might just have better ones too.”