Ana Watson said she has tried everything for her young son Preston, who has epilepsy.
The particular form he has is called “Dravet Syndrome,” caused by a genetic anomaly that was largely unknown when Preston first exhibited its symptoms.
There is little treatment for it and what there is has proven to be ineffective. It started shortly after Preston was born.
“We noticed his legs would tremor and they just thought it was muscles that hadn’t developed and then, at three months when he had his first grand mal seizure, then we knew,” Watson said.
He has literally hundreds of seizures a day. Some are small and others aren’t.
“You think, ‘Is this the seizure when I’m going to have to call 911?’,” Watson said. “And, then you’re last thoughts are, ‘Is this the seizure he’s not going to come out of?’”
Dr. Bob Greenwood, of UNC Children’s Hospital, is Preston’s neurologist.
Dr. Greenwood, too, feels the frustration of dealing with a condition that appears to be stronger than any medicine.
“He has, literally, been treated with every anti-convulsive that we have,” Greenwood said. “And we truly have not found anything that would control his seizures.”
Paige Figi’s daughter, Charlotte, had a similarly debilitating form of epilepsy, just a couple of years ago. But today, she dances like a healthy little girl, because of an experimental treatment made from marijuana.
It’s a cannabis oil that is spread on her food that has shown real promise with a number of children. Enough promise that Watson is moving to Colorado, where it is available.
“If you’re constantly seizing, your brain cannot develop,” Watson said.
Watson is ready to move to a place she has never lived, away from friends and family, for a chance at something that not everyone approves of.
“We can’t wait a year or five years for it to become legal in North Carolina,” Watson said. “We’ve got to go, now.”
She said she knows medical marijuana is not a miracle drug and there are cases where it’s not going to work.
“But how could you pass up the possibility to give your children life?” she said.
Almost all of the THC — the main ingredient doctors worry about in this kind of treatment — has been removed from the oil.
Dr. Greenwood says there are studies on it that just got underway, to see if it is truly safe and effective.
North Carolina has a bill in the state house — sponsored by Greensboro’s Pricey Harrison, among others — to investigate whether legalizing cannabis for medical use would be a good idea. Although that bill is still alive, it appears to be locked up, in committee.