GREENSBORO, N.C. — Preston sits and watches as the things his family has collected over his 12 years are packed up to be moved far away. He watches but is not really sure why.
“Right now he’s on a 2-year-old or 3-year-old’s level,” says Preston’s mother, Ana Watson. “He doesn’t know his address, he doesn’t read, he can’t write and he can’t even draw a circle.”
Preston has a condition called Dravet Syndrome, a severe form of epilepsy which produces dozens – even hundreds – of seizures a day.
Dravet syndrome, also known as Severe Myoclonic Epilepsy of Infancy (SMEI), is a rare and catastrophic form of intractable epilepsy that begins in infancy. Initial seizures are most often prolonged events and in the second year of life other seizure types begin to emerge.
Preston’s condition has not improved in recent months.
The condition is stunting Preston’s neural development and his doctor at UNC School of Medicine has run out of tools to fight it.
“He has literally been treated with every anti-convulsive that we have… and we truly have not found anything that will control his seizures,” says Dr. Robert Greenwood.
Preston’s mother is desperate to find something while there is still time for his brain to develop. The only hopeful treatment Ana has found is in a medicine made from marijuana, called “Charlotte’s Web,” which is beginning to show results in children with severe epilepsy.
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.
“No, it’s not a miracle drug and it’s not a cure. There are cases where it’s not going to work. But how could you pass up that possibility to give your children life?” Watson says.
It’s a cannabis oil that is spread on her food that has shown real promise with a number of children.
But to explore that possibility, the family must move to Colorado. 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.
“But even if it does pass, it’s not going to instantly be set up,” Watson says. “We’re not going to be able to get it tomorrow. It’s going to take time.”
So as the rooms that were once their life are emptied as they head toward an uncertain future, Watson won’t let herself dream too much.
“You don’t really want to get ahead of yourself or to think things that might not happen. But it would be wonderful if it did, absolutely. If he was able to hold a conversation or be a normal 12-year-old,” Watson says.
If you would like to donate, the family has set up a GoFundMe account.